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I am new to this site, and want to say hello to everyone.
Ive got a question regarding ssd. I was diagnosed with rp when i was 18 years old. I am 27 now. My eyes have gotten alot worse. Im considering applying for social security disability. Everything I have read and people I have talked to make it sound like its not an easy process. Also I have a wife and son and Im not sure if they are eligible for anything either. Any help or advice would be greatly appreciated.
Posted on 06/12/10, 12:22 pm
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Reminder: This is a support group for Retinitis Pigmentosa. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Reply #1 - 06/28/10  7:55am
" my partner is 24 and has been recieving a DSP for about 2 years. it wasnt that hard for him to get and it was definatly a good idea so go for it and good luck!!! P.S do you have a guide dog? "
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Reply #2 - 06/28/10  8:09pm
" i dont have or need a seeing eye dog quite yet. But I am going to start looking into that in the near future. Are you in the U.S. ? I'm not sure what DSP is. I am still looking to find out anyones expierience with ssd if anyone has any advice or just your own personal struggles with getting accepted for it , I would appreciate to hear from you. "
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Reply #3 - 09/24/10  2:38am
" my best advise to you is to go talk to someone. That is the easiest way to get an answer =) I am going into my disability office in the next couple of weeks as well. Just got unemployed and am having a really hard time finding work simply because I cannot drive due to RP, so we will see what they say I guess! Good luck to you! "
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Reply #4 - 02/13/11  4:41pm
" I would imagine alot depends on the degree of the RP case. Legally, I can still drive at night but have taken myself off the road. That makes working hours limited to near-impossible - and economy is bad enough. However, I fear each successive eye doctor prognosis - let's face it, if they take away your license - in this day and age?

Depending on the case, your doctors, together with your State's Commission for the Blind, are required to get the ball rolling for SSD. I contacted them in hopes of that being willing to supplement with something part-time. I got a cane, a discount bus pass and info on AccessLink which parallels public transportation. They don't GET you on SSD. It's a case-by-case basis. Commission supplies legal aid to represent you for SSD - once doc makes a judgement - but it's still a process. I know of a case (not sight-related) where doctor has confirmed case being worthy of SSD for years - and still the patient is either denied or waiting. But if you / your doctor has AFFIRMED your eligibility, appeal - appeal - and don't let up. Good luck. "
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Reply #5 - 04/25/11  7:51pm
" Just to add my experience: I took myself off the road when I got down below a 15 degree field of view. I had my personal doctor write out a letter stating that I was legally blind, and then I went and applied for S.S. benefits in Califirnia.
Social Security sent to 2 of their doctors: an ophthalmologist and a psychologist. Neither one of the SS Docs would discuss their findings with me, the patient.
One month later, I was approved for full Social Security benefits. The key part of this equation is that being able to safely drive was a job requirement where I worked. This all happened 8 years ago, and it's been smooth sailing ever since ... with the exception of my vision now only being about 5 degrees wide now. "

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