[blindkid] On Behalf Of Someone Who Called In

[Lisa Rodriguez]

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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