label deafblind

November 8, 1999

CHARGEDad@... wrote:

> Any child diagnosed with CHARGE can use the label deafblind even if they have

good vision or good hearing.

I've been off the list for several weeks now and am really behind. I found this

excerpt in a post but cannot find the original. Can anyone help me with more

information. My granddaughter, Kelsie, has severe colobomas in both eyes. We

don't yet know how well she can see. She seems to have good hearing but has not

been tested at this point. We are taking her to Birmingham Children's Hospital

on Friday to see her eye and ear doctors. Any input will be a tremendous help.

Everyone on this list has been so helpful. I don't often butt in as I don't

feel qualified to offer anything except support. But always know that my

thoughts and prayers are with you all.

November 8, 1999

In a message dated 11/7/1999 8:25:04 PM Central Standard Time,

<< > Any child diagnosed with CHARGE can use the label deafblind even if

they have good vision or good hearing.

>>

I had DB services come out to 's school. They did evaluate her and

offered some suggestions to her teachers. But, in the report we received

back they said,

" does not qualify to continue to be placed on the state of Iowa's

deafblind registry.....Although does have a coloboma in one eye, she

has a visual acuity which is very good. A student must have a visual acuity

of 20/70 to 20/200 or less in the better eye with correction or visual acuity

of 20/200 or less or field restriction of 20 degrees or less in the better

eye with correction in order to be considered visually impaired. 's

use of her functional vision is one of her strengths. "

If a child with CHARGE can use the label DeafBlind but doesn't qualify for

their services, what would be the point. Am I missing something?

Sheryl, Mom to Mitch 13 and 13 CHARGE