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| Has blepharospasm been removed from the SSDI blue book? |  | ||
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Posted by: tatia ® 10/24/2014, 08:10:15 |
Hey everyone, I got a call from another patient in my area. Turns out we both got SSDI review letters in July. I had remembered reading this in SSDI guidelines: "b. Blepharospasm. This movement disorder is characterized by repetitive, bilateral, involuntary closure of the eyelids. If you have this disorder, you may have measurable visual acuities and visual fields that do not satisfy the criteria of 2.02 or 2.03. Blepharospasm generally responds to therapy. However, if therapy is not effective, we will consider how the involuntary closure of your eyelids affects your ability to maintain visual functioning over time."
He asked me to send him a link to that, but when I go to SSDI impairment listing now, a search yields NO results for blepharospasm. The link I posted above is from 2010. I have this sick feeling like they removed blepharospasm from the SSDI approved list of impairments, and are now targeting us for reviews. I had not been reviewed since I got SSDI in 2004. He got SSDI in 2010. We both got our review notices in July. That makes me suspicious. Even more, they are sending him to an ophthalmologist rather than a neurologist. I am worried that, given the way the blue book reads now, they will make a determination solely on visual acuity. Any reassurances? Anyone else get put up for review this year? Tatia Edit: I finally noticed in section 2: special senses, scroll down to BOLD letter E: How do we evaluate impairments that do not meet one of the special senses and speech listings? So I guess they're just making it a little harder on BEB patients. I still wonder if the timing of our reviews coincides with removal of blepharospasm from the blue book. Modified by tatia at Fri, Oct 24, 2014, 09:50:50 |
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| Re: Has blepharospasm been removed from the SSDI blue book? -- tatia | Top of thread | Archive | |
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| Re: Has blepharospasm been removed from the SSDI blue book? -- tatia | Top of thread | Archive | |
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Posted by: pdb ® 10/24/2014, 14:53:32 |
Yes, it has disappeared, as you note. I've had calls from a couple of folks saying they've been invited to reviews. I don't know if this is coincidence or something specifically aimed at this community. I'll ask some folk who may be able to dig in deeper. On the other hand let's not forget that people were getting disability for BEB, when bad enough, before the specific reference in the blue book appeared. Peter Modified by pdb at Fri, Oct 24, 2014, 14:57:47 |
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| Re: Re: Has blepharospasm been removed from the SSDI blue book? -- pdb | Top of thread | Archive | |
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Posted by: pdb ® 10/24/2014, 18:21:47 |
a high level view of the steps is here: http://www.ssa.gov/dibplan/dqualify5.htm#a0=-1 That clearly indicates that regardless of the specifics of tests for visual acuity, if you can't actually work because of a medical condition, you can qualify. It would be so much nicer if it still specifically referenced blepharospasm. Peter |
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| Re: Re: Has blepharospasm been removed from the SSDI blue book? -- pdb | Top of thread | Archive | |
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Posted by: BarbaraB ® 10/28/2014, 14:07:08 |
In the lat few years, many changes have come down the pike. Examples are:
* SSDI no longer calls it the "blue book" but rather the "List of Impairments." * The code for blepharospasm seems to have disappeared from the List of Impairments on the SSA website, however other codes have taken its place referring to technical blindness and inability to be actively and gainfully employed. * If you have ben "invited" to a review, please check your original letter of SSDI approval and read it carefully. It might say that you are subject to these reviews and how often. It should also state the SSDI code under which you were approved. Please feel free to contact me at the listed email for more discussion. Barbara dir-e@blepharospasm.org |
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| Re: Re: Has blepharospasm been removed from the SSDI blue book? -- BarbaraB | Top of thread | Archive | |
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Posted by: tatia ® 11/02/2014, 07:32:53 |
Thank you Peter and Barbara for your input. Peter, you are absolutely right, and I am one of those you mention who got SSDI before it was ever listed in their documents. So no worries about being able to get it without it being explicitly mentioned. I was just a little skeptical when our reviews came up at the same time, even though I am at the 10-year mark and he is only at 4. I have since heard from others with different conditions entirely who are also getting reviewed, so I guess they're just trying to clean house across the board. Barbara, thanks for information about the changes. I guess we just have to expect changes and adapt to them. My original letter of approval from 2004 is only a few sentences long and includes no mention of codes or conditions whatsoever. If the approval letters are more detailed now, I think that is a good change. |
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