Posts Tagged 'SSDI/SSI'

October 2012 CFSAC videos

(Sorry if these are not in order…. the last link is to a page that has all of the videos)

 

http://www.youtube.com/watch?v=4Zl2RX4URuI&feature=plcp Welcome & Opening Remarks (CFSAC Fall 2012)

http://www.youtube.com/watch?v=01hZYq4GMtI&feature=plcp Biomarkers – An Overview & Future Look (CFSAC Fall 2012)

http://www.youtube.com/watch?v=oIGpfvfFZ1w&feature=relmfu Public Comment on Day One – AM (CFSAC Fall 2012)

http://www.youtube.com/watch?v=buDxhejdg90&feature=plcp Agency Updates from HRSA, NIH, and FDA (CFSAC Fall 2012)

http://www.youtube.com/watch?v=IGASSh7YV3s&feature=plcp FDA & Drug Development (CFSAC Fall 2012)

http://www.youtube.com/watch?v=_fIEeQBdvxM&feature=plcp Public Comment on Day One – PM (CFSAC Fall 2012)

http://www.youtube.com/watch?v=Fs1A6KhHInU&feature=relmfu Committee Discussion & Plans for Day Two (CFSAC Fall 2012)

http://www.youtube.com/watch?v=PWBmqd8LDhg&feature=plcp Opening Remarks & Agency Updates (CFSAC Fall 2012)

http://www.youtube.com/watch?v=af_r5LiIjXQ&feature=relmfu Social Security Administration (CFSAC Fall 2012)

http://www.youtube.com/watch?v=qGb0U6EaI4o&feature=relmfu Public Comment on Day Two (CFSAC Fall 2012)

http://www.youtube.com/watch?v=MTHpny0u-XU&feature=relmfu ME/CFS Organizations (CFSAC Fall 2012)

http://www.youtube.com/watch?v=NFaXiiSdZqI&feature=relmfu A Path Forward (CFSAC Fall 2012)

http://www.youtube.com/watch?v=CO9bO-udcY0&feature=relmfu Finalize Recommendations (CFSAC Fall 2012)

http://www.youtube.com/user/USGOVHHS/videos?query=CFSAC Search results for “CFSAC”:

 

 

 

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Link for CFSAC LiveStream

 

On Wednesday October 3rd and Thursday October 4th, the CFSAC meeting will be LiveStreamed. The link is:

http://www.hhs.gov/live/

 

CFSAC Meeting October 3 – 4

Agenda
October 3, 2012

9:00 am

Call to Order
Roll Call

Gailen Marshall Jr. M.D., PhD
Chair

9:15 am

Welcome Statement from the Assistant Secretary for Health

Howard K. Koh, M.D., M.P.H.Assistant Secretary for Health
U.S. Department of Health and Human Services

9:45 am

Opening Remarks

Housekeeping

Gailen Marshall Jr. M.D., PhD Chair

Nancy C. Lee, M.D.
Designated Federal Officer

10:00 am

Biomarkers
An Overview and Future Look

Jordan Dimitrakoff, M.D., Ph.D.
Mary Ann Fletcher, Ph.D.
Committee Members

11:00 am 

Break

11:15 am 

Public Comment

Public

12:15 pm

Lunch Break

1:15pm

Agency Updates:
HRSA, NIH, FDA

Ex Officio Members

2:15pm

FDA and Drug Development

Sandra L. Kweder, M.D., F.A.C.P.
RADM U.S. Public Health Service
Deputy Director, Office of New Drugs
Center for Drug Evaluation & Research, FDA

3:15 pm  

Break

3:30pm

Public Comment

Public

4:30pm

Committee Discussion and Plans for Day 2

Committee Members

5:00 pm

Adjourn

Nancy C. Lee, M.D.

Agenda

October 4, 2012

9:00 am

Call to Order
Opening Remarks
Roll Call


Housekeeping

Gailen Marshall Jr. M.D., PhD
Chair

Nancy C. Lee, M.D.
Designated Federal Officer

9:15 am

Agency Updates:
CMS, AHRQ, CDC, SSA

Ex Officio Members

10:15 am

Social Security Administration

Arthur R.(Art) Spencer
Associate Commissioner,
Office of Disability Programs
SSA

11:15 am

Break

11:30 am

Public Comment

Public

12:30 pm

Lunch Break

Subcommittee Members

1:30 pm

ME/CFS Organizations

Panel Discussion
ME/CFS Organizations

2:30 pm

Break

2:40 pm

ME/CFS Case Definition – A Path Forward

Gailen Marshall Jr. M.D., PhD
Chair
Committee Members

3:40 pm

Committee Discussion: Finalize Recommendations

Committee Members

5:00 pm

Adjourn

Nancy C. Lee, M.D.

 

Reminder – take the ME/CFS Social Security Disability/SSI Survey now!

Thanks to everyone who has taken the survey.

For those who have not done so yet here is the link:   

http://app.fluidsurveys.com/surveys/phoenix-rising/me-cfs-patients-ssdi-ssi/

You can do it in parts by saving and returning.

Take the ME/CFS Social Security Disability/SSI Survey

Anecdotal reports from physicians and patients suggest that being approved for Social Security disability (SSDI) may be more difficult for ME/CFS patients than for patients with other illnesses. Documentation of success rates is lacking and there is very little hard data on what works best in the disability process.

We look forward to finding out many things with this survey.

Among them:

to see if there are common threads in successful applications.

to see if the application process has been streamlined  – Social Security says that it has.

to find out how things have changed over time for applicants and

what sort of success rates applicants have with SSDI/SSI determinations.

If you are a U.S.* citizen, and have ever filed for SSDI and/or SSI, please complete the survey.

Here is the link for the survey:

http://app.fluidsurveys.com/surveys/phoenix-rising/me-cfs-patients-ssdi-ssi/

 

The information gathered will be used to provide a report to the CFSAC and the Social Security Administration on the “State of the Social Security Disability Process in the Online (US) CFS Community” and to inform future disability applicants with ME/CFS of factors that might help them be more successful.

You can do the survey in multiple passes by saving and returning.

Feel free to have someone complete the survey for you (if they know you) if you cannot do so yourself.) Only one survey per computer, though –if multiple members of your household have gone through the disability process you’ll need to use more than one computer.

All personal information such as name and email address (if you chose to provide them) will be kept confidential.

Encourage others who have applied for SSDI and or SSI to take the survey also!

* – It is not our intention to exclude citizens of other countries – we just don’t know enough (yet) about social services and disability in other countries to put together similar surveys. Help us all learn about social services and disability in your country by submitting legitimate/valid information about them.