Quote
Jane Kogan


From: Jane Kogan <jkogan@hdsa.org>

Date: March 25, 2014, 4:22:25 PM EDT
Subject: SSA Revised Listings for HD: PLEASE HELP

You are receiving this email because you responded to a survey about your experience with the Social Security Administration.

I wanted to let you know that, after thirty years, SSA has finally released the draft of the neurological listings.

BASED UPON HDSA’s ANALYSIS, THIS LISTING IS WORSE THAN THE PREVIOUS ONE!
Here is the text of the new listing: [www.gpo.gov]
· HD listing preamble is on page 10641 of the Register (page 7 of 20, left hand column)

· HD listing is on page 10649 of the Register (page 16 of 20, right hand column)

· JHD listing preamble is on 10652 (18 out of 20, middle column)

· JHD listing is on page 10653 (19 out of 20, right hand column)

There is an inconsistency between the listings (that do not mention any non-motor symptoms) and the preamble, which states that: When these disorders result in solely cognitive and other mental function effects, we evaluate the disorder under 12.02/112.02 (for juvenile)
HDSA’s argument is that unless it is spelled out in the listing itself, the examiner (and even a medical professional who is unfamiliar with HD) won’t know to look because the person with HD appears fine in person and often has the insight to describe symptoms.

You can help by submitting formal comments to the Social Security Administration. The more letters SSA receives, the more likely they are to make substantive changes.

Please be sure to note any of the following:

· If you or your loved one was denied disability on the first application

· If you or a loved one was disabled by the cognitive or behavioral symptoms of HD (be sure to describe them!)

· If the examiner was unfamiliar with HD, and you were asked questions that were not relevant

· If you or your loved one had to have a consultative exam and the doctor did not ask the right questions

HDSA can give feedback on individual letters! Please contact me at jkogan@hdsa.org if you need help.

OR, if you would like to just submit the comment, you can do so here: [www.regulations.gov]

I hope that you take a minute to speak up. We only have until mid-April to participate, and want to make sure that SSA hears from the HD community that these listings are inadequate.