Welcome to a “Special Alert” Government Affairs E-mail Message from the Sjögren’s Syndrome Foundation!
June 18th 2003:
The Social Security Administration is reviewing sections under its disability guidelines that are important to Sjögren’s syndrome patients. YOU can help!
Do you have a personal story to tell or personal statement to make that would enhance our ability to convince the Social Security Administration to improve its coverage of Sjögren's syndrome in its disability coverage?
If so, the Sjögren's Syndrome Foundation needs you!
The Foundation will be submitting recommended changes for social security disability sections relevant to Sjögren's that are currently under review. These recommendations focus on medical guidelines and are being compiled by the Foundation's Medical and Scientific Advisory Board and Government Affairs Committee. For example, paragraphs specifically on lupus and scleroderma are listed in the Immune System guidelines, but Sjögren's syndrome is not. SSF will be submitting draft paragraphs on Sjögren's to insert in all relevant sections as well as adding manifestations of Sjögren's in general copy as needed.
However, the urging of people from across the country and inclusion of personal stories will really make a difference. These stories should illustrate the need for attention to and specific inclusion of Sjögren's syndrome in social security disability language.
What should you say, and how should say it?
- Whatever you write, keep it short and easy to understand.
- Your focus needs to be on illustrating why Sjögren's can be disabling and prevent someone from working, working fulltime, or working under specific conditions.
- If you don't have a short story or personal examples, simply make a statement that the Social Security Administration (SSA) needs to know that Sjögren's syndrome is a serious disease, with major health consequences, and can be debilitating. Request that SSA include specific guidelines for disability for Sjögren's syndrome.
- You can also request that SSA give serious consideration to the suggestions being submitted by the Sjögren's Syndrome Foundation, whose Medical and Scientific Advisory Board is crafting recommended additions and changes.
How do you submit comments?
- If you want help from the Sjögren's Syndrome Foundation, e-mail khammitt@Sjögrens.org. SSF's Kathy Hammitt will be glad to help you craft what you want to say or guide you through the process.
- If you're ready and willing to submit comments on your own, cut and paste the following internet address into your browser and hit "Go!". Full instructions on submitting comments are available at:
http://policy.ssa.gov/erm/rules.nsf/ - Click on "Comment on This Proposed Rule" near the bottom left portion of this page for the comment form.
We recommend that you look over some of the other comments.
We're so excited that two comments have already been submitted on Sjögren's! We urge you to read those and others before submitting your own. To do so, click on the blue arrow at the bottom of the above internet page.
Finally: Send us a copy of your comment!
To make sure the Foundation knows about your contributions to help with social security disability, e-mail a copy to khammitt@Sjögrens.org. If you are willing to let SSF use a copy of your letter in SSF publications or website or other ways to garner more attention for the need of Sjögren's patients, please let us know.
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*** ADVOCACY MEANS ADDING YOUR VOICE TO MANY OTHERS SO THAT TOGETHER WE MAKE A DIFFERENCE! ***
Government officials are more likely to enforce change when the citizens of this country demand it. Let your voice be heard! Help make life better for the four million Americans who suffer from Sjögren’s syndrome.
