[blindkid] On Behalf Of Someone Who Called In

[Carol Castellano]

Thanks, Lisa, on behalf of all us parents out here hoping that this family
gets the help it needs.

Best wishes,
Carol

Carol Castellano
Parents of Blind Children-NJ
National Organization of Parents of Blind Children
973-377-0976
carol_castellano at verizon.net
www.blindchildren.org
www.nopbc.org

On Wed, Feb 17, 2016 at 11:11 AM, Lisa Rodriguez via blindkid <
blindkid at nfbnet.org> wrote:

> Hello, I am a sighted parent of three visually impaired children. She
> needs to take her granddaughter to pediatric ophthalmology at Riley
> Hospital, if the child is on Medicaid they do provide transportation, you
> just have to set it up in advance. if you need any help with this family I
> am more than willing to try and help. I live in Indianapolis but I could
> try and help over the phone. Thanks Lisa Wright
>
> Sent from my iPhone
>
> > On Feb 17, 2016, at 10:44 AM, Kane Brolin via blindkid <
> blindkid at nfbnet.org> wrote:
> >
> > Greetings.  Please know that this is my first interaction with the
> > Blindkid mailing list because personally, being a totally blind parent
> > of sighted children, I became first engaged with the BlParent list.
> > But since I am also an officer in a small, start-up Federation chapter
> > located in an area that has not had a lot of Federation coverage for a
> > few decades, I'm trying to build bridges and relationships that will
> > help lots of people facing different circumstances.  So I am glad to
> > be a new subscriber to this list.
> >
> > Just a few minutes ago, I received a call from a lady calling herself
> > Tammy who is located in Northeastern Indiana and who had been referred
> > to me and my Federation chapter by a social services organization
> > covering her area.  She is raising a pre-school-aged granddaughter who
> > has been diagnosed with a couple of unusual-sounding,
> > eyesight-limiting conditions that are leading to her having
> > developmental delays--mostly because the family cannot afford all the
> > needed medical tests that will indicate clearly the treatment she must
> > undergo, and her pre-school has no idea what to do.  Mainly, these are
> > binocular vision dysfunction
> >
> http://www.city-optometry.com/2015/06/05/binocular-vision-dysfunction-and-treatment/
> > and esophoria https://en.wikipedia.org/wiki/Esophoria.  This
> > grandmother is on Social Security Disability herself, and the type of
> > developmental optometrist who needs to conduct the needed tests in her
> > area does not take Medicaid.
> >
> > My NFB chapter meets about 62 miles away from where Tammy and her
> > family live.  There is no Federation chapter headquartered close to
> > them, although there is a center for independent living through which
> > she is seeking some financial assistance.  I know my Federation
> > chapter cannot simply open our checkbook and donate several hundred
> > dollars to this family.  For one thing, this woman and her
> > granddaughter live far enough away that it seems probable they never
> > would become active in the month-to-month activities of my chapter
> > even if we could help them substantially, so simply cutting a check to
> > satisfy  the immediate medical expense at this time strikes me as
> > unwise.
> >
> > I understand that a best practice here probably is to get Tammy hooked
> > up with the NFB in general and with NOPBC and the Blindkid list in
> > particular so she can do her own networking.  But I'm just putting a
> > feeler out here first to see:
> >
> > (1)  Is there a reasonable chance this little girl's functional
> > eyesight is permanently damaged so that she needs to receive extensive
> > blindness training in preparation for a lifetime of blindness? and
> >
> > (2) If any of you were in this position, where would you turn as a
> > self-advocate to ensure that this child is receiving the type of IEP
> > and educational support she is due?
> >
> > Both the conditions identified above seem a little less cut-and-dried
> > than retinopathy of prematurity or retinitis pigmentosa, two fairly
> > common eye conditions I am familiar with that lead unarguably to
> > blindness.  My gut tells me that if a school administrator were
> > looking at this case, he or she might well just advise getting a pair
> > of prescription glasses and then just presuming the girl can or should
> > use residual eyesight to get through school.
> >
> > I feel quite out of my depth here, so just appreciate any resources or
> > tips you believe might be of some use to Tammy and her granddaughter.
> >
> > Kind regards,
> >
> > Kane Brolin, Vice President
> > Michiana Chapter, National Federation of the Blind
> >
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