Survey results

[Guest guest]

>

> Subject: Re: Re: comment about reporting problems with equipment

>

> Referring to Ben shaking his hands when excited or thinking, Elaine

> stated, " Kay mentioned that JD did this too. My hearing child does

> that and always has. I figured it was the ADHD thing going on

> with him?????? Who knows?! "

This has reminded me to check in with a few preliminary items from the

survey that has been ongoing for the last couple of weeks (at

http://www.techtorial.com/hear/ ). First of all, thanks everyone who

answered...there are about 85 responses so far, and I'd love to get to

100, but there's already some excellent info!

I took the first batch of about 60 responses, and did some analysis.

The first thing I noticed is that a full 20 percent of our kids with

hearing loss are being treated for or evaluated for ADD/ADHD. In the

general school-age population, the numbers are estimated to be

anywhere from 3-8 percent, but the most common number I hear is about

5 percent.

One of the deaf educators I work with (on one of the committees) was

amazed to get this bit of information. She knew that kids with hearing

loss were being diagnosed with attention issues more often than

hearing kids, but the sheer volume had her surprised. I am confident

that, within the next year, we will be seeking grant funding to do

a " scientific " study of issues of ADD/ADHD with kids who have hearing

loss. Her concern is that kids could be showing ADD/ADHD symptoms as

a result of not getting enough auditory input, and would like to

investigate that further. (That's not to say that these kids DON'T

have attention deficits! The real question is, clinically, why? How

is it related to hearing loss, if at all?)

Another committee and another interested party...this one is an

educational audiologist who's already working on the concept of

a " medical home " for children with hearing loss..that is, a way to

ensure that every child with hearing loss has a well-integrated team

of people putting together all the pieces of the hearing

loss " puzzle " ...screening, detection, diganosis, hearing aids,

speech/language development, medical intervention, audiological

management, and education.

The vast majority of parents in the survey thought that *parents*

should be the " case managers " for their children's needs. To say that

this audiologist (who leads the committee on developing a protocol for

initial diagnosis and management) was floored by this response is a

total understatement. She was speechless. This committee has two

parents on it (I'm one -- the other is a parent who is also a

physician, and her child has serious medical involvements other than

hearing loss). The rest of the members are physicians and

audiologists, with a couple of administrators thrown in (a teacher of

the deaf, a rep from Early Intervention). The " medical home " is a

very popular concept these days in all aspects of health care for

children, and to make a long story short, the direction that this

committee was going in was to recommend that a child's primary care

physician be the " point person " for managing the needs of a child

with hearing loss. Now, with other medical issues present, maybe

that's not such a bad idea, BUT...how many of the pediatricians we

work with have a clue about hearing loss? Never mind the fact that

they don't have time to deal with Early Intervention, audiologists,

speech therapists, and schools...they're just totally out of their

league in most cases, when it comes to issues of hearing loss in

infants, preschoolers, and school age children.

Based on this information, the principal investigator on the grant is

requesting an extension of the grant to do further research into the

actual (rather than perceived) needs of families of kids with hearing

loss.

I expect to hear very soon about a different tack that this committee

is going to take, and it's thanks in large part to you folks. Rather

than treating hearing loss as an " illness " which needs to be treated

and managed by a physician, it should be looked at as a global

characteristic of a child, and needs and interventions should be

specific to that child. (As if WE didn't know that already.)

Thank you again for the data so far. This is just the beginning!