Making the System Just a Little Bit Better

 

Amy Cohen Effron left the following comment on my post "To Implant or Not To Implant a Child Who Has Never Been Amplified:"

Same here, and our challenge still lies:

How can we effectively communicate to the parents that their 'expectations' are unrealistic, and how can we help the parents to embrace the child's unique differences?

It happens a lot. Research done by CDC in 2006 indicate that approximately 46 percent of infants who were referred for audiological evaluation did not follow up or not having a formal documentation of their hearing loss.

Therefore, the time is lost on this child.

Because of what reason?

I can speculate few things:

1. Economic reasons (insurance coverage for audiological evaluation, or transportation to the clinic?)

2. Shock? Denial? Grief processes is not been followed up?

3. Lack of resources in that area?

4. Fear of unknown?

Then with this lack of follow up,the child will lag with their language development by age of 3 to 5, and it's harder when a child enrolls in school.

Then by that time, get implanted between 5 to 7 years old, would that help?

I don't think so.

Maybe parents are afraid with the concept of implanting 6 month old infant? This procedure does have some risks, no matter benefits may outweights risks.

It is very costly. Not many parents have health insurance, and it becomes an unfair advantage.

EXCEPT...

if these parents are able to follow up with that for whatever reason.

I pray hard that these parents are willing to take a free class on Baby Signs for their child. That is what American Sign Language can be used for the first few years as a 'safety-net' in case if this child cannot get an implant for whatever reasons.

Can we agree to see this way? Sign language? ASL (or other country's sign language) is not a dirty word anymore. It is a research-based valuable approach . Not an alternative, it is a viable approach too.

Best,
Amy Cohen Efron

Karen Mayes left this comment on the post "Mother Fights System to Get Help For Deaf Son:"

Oh boy... I see the hospitals need to develop resources (information sources, unbiased counseling, etc.) in place for any newborns, so that the parents would have information in hand, feel they are not alone and lost.

Anonymous left this comment:

And EVERYONE, especially doctors, audiologists, speech therapists, parents, etc., need to know that deafness does not always mean zero hearing, speech, or communication ability. Within our community is a lot of diversity in residual hearing, use of amplification, speech ability, signing ability, cultural identity, life experiences, cognitive functioning, and personality types.


We need to "Fix" so many things about the process to make it just a little bit better for the families now that the Medical Professionals recognize the importance of our role in rendering their job even more successful.

Surprise!(Thanks, Ferdi *smile*)...I have been asked to be part of the Steering Committee for the NHS 2010 Conference. My responsibility as "Ambassador" will be that of representing the importance of the collaboration between Families and Medical Professionals at the various stages of the families' journeys in Deafness from Newborn Hearing Screening Intervention Strategies, Diagnosis, etc. I will be sure to emphasize the need for quality resources...actually I may even be creating a few resources here in Tuscany...but that's another issue. Aboveall, however, I will act as a go-between for the International Coalition of Parents (ICOP) that is currently forming...lots of exciting things are happening.

PS. HAPPY FOURTH OF JULY TO ALLLLLLLLLLLLLL...AND HAPPY BIRTHDAY NIKI!
CHECK OUT THIS VIDEO THAT A "WANDERFUL" FRIEND SENT: IT'S SOOOOOOO AMERICAN!