[blindkid] On Behalf Of Someone Who Called In

Kane Brolin kbrolin65 at gmail.com
Wed Feb 17 15:44:04 UTC 2016

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
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

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

More information about the BlindKid mailing list