Living With HD
HDSA Advocates for HD Parity in SSA's Proposed Neurological Listings
June 3, 2014
An amazing effort by hdsa advocates
Thank you to everyone who submitted comments to the Social Security Administration! Out of the 3080 comments submitted about the proposed neurological listings, 654 (21.2%) were about HD
You Can Still Help! Though the opportunty to submit comments to SSA has ended, you can help HD families have better access to Social Security Disability by advocating for the Huntington's Disease Parity Act.
May 16, 2014
HDSA Participates in ssa call
On Monday, May 12, HDSA participated in a call with the Social Security Administration. As a result of feedback received on the call, HDSA prepared additional comments.
Click here to submit your comment to SSA
Your comment can be as simple as: I agree with the comments submitted by the Huntington's Disease Society of America (HDSA)
Click here for the call transcript
May 1, 2014
Comment Deadline Extended to June 2
Click here to submit your comment to SSA. Please take a few minutes to submit your comment so that SSA understands that these listings will hurt HD families!
Click here to read the comments that have been submitted to date
April 28, 2014
ssa Teleconference Regarding the Neurological Listings
On Monday, May 12, 2014 at 1:00 p.m., EDT, SSA will conduct an informational teleconference on certain proposed changes to the medical criteria for evaluating neurological disorders in the Listing of Impairments (listings). The teleconference is open to the public and will be strictly informational.
Date and Time: The teleconference will take place on Monday, May 12, 2014 at 1:00 p.m., EDT.
Teleconference: To join us by teleconference, dial phone number 1-800-930-7709 and use passcode number 112683.
March 27, 2014
hdsa comments on draft neurological listings
After more than thirty years, SSA has finally released the draft of the neurological listings. Based upon HDSA’s analysis, this listing leaves many of the same gaps unaddressed and is worse than the listing we have now.
Here is the text of the new listing: http://www.gpo.gov/fdsys/pkg/FR-2014-02-25/pdf/2014-02659.pdf
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 these other sections are spelled out in the listing itself, the examiner (and even a medical professional who is unfamiliar with HD) won’t know that they should look at the preamble because the person with HD appears fine in person and often lacks the insight to describe symptoms.
You can help to convince SSA to make changes to these new listings 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 Jane Kogan at firstname.lastname@example.org if you need help.
OR, If you would like to just submit the comment, you can do so here: http://www.regulations.gov/#!submitComment;D=SSA-2006-0140-0059
It is important that HD families speak up! We only have until mid-April to submit comments and we want to ensure that SSA hears from the HD community that these listings are inadequate.