Re: [Fwd: Fwd: [Fwd: [Fwd: nystagmus]]]

[Guest guest]

Dear Tim, THANK YOU so very much! I have printed the information and forwarded

it to my family! I have

also responded to the email and included my address for information in order to

give to my Neice and her

family. God bless you! I'm so excited about the assistance my little Rose is

going to receive!

Tim Hartshorne wrote:

> I got a response from and Beth (Beth is our technical consultant

> for the deaf-blind project).

>

> Tim Hartshorne

>

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

> ------------------------------------------------------------------------

>

> Subject: Fwd: [Fwd: [Fwd: nystagmus]]

> Date: Wed, 25 Oct 2000 10:48:44 -0400

>

> To: Tim.Hartshorne@...

>

> Hi, Tim- forwarded this message to me.

> If this parent thinks that her child's ophthalmologist has not assessed

> her child's vision correctly, maybe the DB project could get involved

> by doing or assisting a teacher consultant of the visually impaired to

> do a functional vision assessment (FVA). The information obtained from

> an FVA may confirm the doctor's findings, or contradict it.

> Every state has a definition of deafblindness- sometimes, it is more

> inclusive than the federal definition. For example, the definition in

> FL includes students with acuities of 20/60 or less (the federal

> definition is 20/200 or less). It is my understanding that the child

> must at least meet the particular state's definition of deafblind in

> order to receive services. In this case, because the actual acuity is

> in question, she should be able to obtain services (the federal

> definition allows us to count children who have questionable losses,

> most likely due to the fact that so many of the children are " difficult

> to test. " ). This all ties into the census- the child must be on the

> census in order to recieve services from the deafblind project.

> An auditory processing disorder is sufficient to qualify her child as

> far as the hearing piece is concerned.

> Hope that this is helpful- Beth

>

> Beth Kennedy, M.Ed

> Project Coordinator

> DB Central: Michigan Services for Children and Youth Who Are Deaf-Blind

> Sloan 105 Central Michigan University

> Mount Pleasant, MI 48859

> (517)774-2725 (V/TTY)

> Toll-Free (V/TTY)

> Fax (517)774-2553

>

> ------------------------------------------------------------------------

>

> Subject: [Fwd: [Fwd: nystagmus]]

> Date: Tue, 24 Oct 2000 22:59:14 -0400

>

> To: Beth.Kennedy@...

>

> This is from the CHARGE list. DO you know the answer? You could reply to

> Tim. THanks.

>

> Tim Hartshorne wrote:

>

> > I don't think this is accurate, but would you care to respond?

> >

> > ------------------------------------------------------------------------

> >

> > Subject: nystagmus

> > Date: Tue, 24 Oct 2000 07:58:06 -0700 (PDT)

> >

> > Reply-To: CHARGEegroups

> > To: chargeegroups

> >

> >

> >

> > To work with the DB project, doesn't a dr have to

> > label the child legally blind? She also has no

> > hearing impairment other than a severe auditory

> > processing disorder (so that's all neurological).

> >

> > I'm kind of angry that our doctor will not classify my

> > daughter as low vision, legally blind, or whatever. I

> > feel like she is, but I don't know how to get services

> > without the classification, and more importantly, it

> > confuses me. He says her vision is fine (20/60 in her

> > good eye, 20/100 in her poor eye with glasses) and

> > that's that.

> >

> > At least the school is giving her vision services

> > regardless of what the dr says. And those are the

> > most important services we need.

> >

> > Jeanne

> >

> > __________________________________________________

> >