[Blindtlk] Question about SSI

Tue May 17 21:07:07 UTC 2016

In future, it very well may matter considerably if this is genetic.  In 
that case, a little genetic editing and this disorder goes away.  If 
enough of people with the diagnosis get their DNA tested and start 
comparing notes it may be a smoking gun is not found or it may be the 
gun gets found.

On Tue, 17 May 2016, David Andrews via blindtlk wrote:

> Date: Tue, 17 May 2016 15:27:28
> From: David Andrews via blindtlk <blindtlk at nfbnet.org>
> To: Blind Talk Mailing List <blindtlk at nfbnet.org>
> Cc: David Andrews <dandrews at visi.com>
> Subject: Re: [Blindtlk] Question about SSI
> 
> I think they now call RLFP, retenopothy of Prematurity.  It is what I have, 
> but in one sense, it doesn't matter.  You can either see or you can't.  If 
> you can't it probably doesn't matter why.
>
> Dave
>
> At 11:32 AM 5/16/2016, you wrote:
>> retrolentrilfibroplasia I suspect, that was my first diagnosis but the last 
>> eye doctor I visited told me it was Microthalmus.
>> 
>> On Mon, 16 May 2016, Ericka via blindtlk wrote:
>> 
>>> Date: Mon, 16 May 2016 12:28:20
>>> From: Ericka via blindtlk <blindtlk at nfbnet.org>
>>> To: Blind Talk Mailing List <blindtlk at nfbnet.org>
>>> Cc: Ericka <dotwriter1 at gmail.com>
>>> Subject: Re: [Blindtlk] Question about SSI
>>> Very interesting. As a sidenote, I'm kind of jealous of those of you with 
>>> a diagnosis. 40+ years later and UW Madison hospitals and clinics still 
>>> hasn't a clue. I have I wear the retinas look like I've had oxygen at 
>>> birth but didn't and wasn't even a preemie. Someone use the fancy term 
>>> recently for it, but I don't remember what it was. It was the first time 
>>> someone had given it a name besides congenital folds of the retina. I have 
>>> some vision in one eye but as I've grown older it's become less and less 
>>> useful. Social Security's never questioned me but once that I can recall. 
>>> They sent me a form to fill out recently and I never had to see a doctor 
>>> for them.
>>> 
>>> Ericka Short
>>> "What is right is not always popular; what is popular is not always 
>>> right."
>>> 
>>> from my iPhone
>>> 
>>>> On May 16, 2016, at 10:13 AM, Jude DaShiell via blindtlk 
>>>> <blindtlk at nfbnet.org> wrote:
>>>> 
>>>> My eye condition is microthalmus and because of that I expect that's how 
>>>> my social security record got permanent blindness written on it.  For 
>>>> those that don't know, microthalmus is a prenatal condition in which the 
>>>> eyes never develop enough to see.  It's not known if this condition is 
>>>> genetic or caused by the environment the newborn lived in before becoming 
>>>> a newborn yet.
>>>> 
>>>>> On Mon, 16 May 2016, A Kelly via blindtlk wrote:
>>>>> 
>>>>> Date: Mon, 16 May 2016 08:59:32
>>>>> From: A Kelly via blindtlk <blindtlk at nfbnet.org>
>>>>> To: Blind Talk Mailing List <blindtlk at nfbnet.org>
>>>>> Cc: A Kelly <gadgetgirlkelly at gmail.com>
>>>>> Subject: Re: [Blindtlk] Question about SSI
>>>>> Yes, some Social Security offices in NY, do require an in-person visit 
>>>>> by you.  They may also send you to a doctor of their choice to ensure 
>>>>> you are blind.  When I asked why do they do this, I was told some people 
>>>>> suffer temporary blindness and never report when their vision returns. 
>>>>> With that in mind, Social Security may ask you to come to their offices 
>>>>> over the years until they are convinced your blindness is permanent. 
>>>>> Hope this helps.
>>>>> 
>>>>> Regards,
>>>>> Gadget Girl
>>>>> 
>>>>> 
>>>>>> On May 16, 2016, at 8:15 AM, Sami Osborne via blindtlk 
>>>>>> <blindtlk at nfbnet.org> wrote:
>>>>>> 
>>>>>> Hi all,
>>>>>> 
>>>>>> I'm having a rather frustrating issue with Social Security here in NY, 
>>>>>> who are providing me my SSI benefits.  A few weeks ago, I received a 
>>>>>> letter in the mail from Social Security telling me that I need to show 
>>>>>> up in person at their office because they wanted to prove that I'm 
>>>>>> actually blind even though I provided them with all the documentation 
>>>>>> and was approved almost six months ago.  What bothers me is that as I 
>>>>>> said, they asked me to show up in person at their office.  My mom 
>>>>>> thought that we could just talk to them on the phone, and she called 
>>>>>> and spoke with them (I couldn't because I'm at my blindness training 
>>>>>> center for the week and only go home on weekends).  My mom said that 
>>>>>> she even spoke with them two or three times.  The first time they said 
>>>>>> that they would call me personally at home to set up the appointment 
>>>>>> for showing up in person, but obviously I wouldn't have been able to 
>>>>>> speak with them since I'm not home during the week.  My mom gave them 
>>>>>> my cell phone n
>> u
>>> m
>>>> b
>>>>> er, but they haven't called me that way either.  This is a very 
>>>>> frustrating issue in my opinion.  I have asked other friends of mine at 
>>>>> the training center that I'm at if they had to show up at their Social 
>>>>> Security office six months after they were approved for SSI benefits, 
>>>>> and they said no.  My mom thinks that it depends on the state, and that 
>>>>> the reason they do that is probably because they want to make sure that 
>>>>> you're not cheating in getting SSI (by the way, the people at the 
>>>>> training center that I'm at come from all over the country).
>>>>>> 
>>>>>> So I'd like to know if you guys have gone through a similar experience, 
>>>>>> and if so, have you had to show up in person at the office or just talk 
>>>>>> with them on the phone?
>>>>>> 
>>>>>> Hope to hear from you soon, and for those of you who just finished with 
>>>>>> college, I hope you're enjoying the end as your semester!
>>>>>> 
>>>>>> Thanks,
>
>
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