Safeguard Social Security Disability


Advocacy Goals

In 2002 the Social Security’s Policy Interpretation Ruling on Interstitial Cystitis (IC) recognized IC as a condition that can be used as a basis for a disability finding, and it guides the agency’s evaluation of IC claims. The ICA continues to advocate for the safeguarding of SSDI by:

  • Monitoring SSA policy and regulations to safeguard IC disability rights.
  • Alerting the IC community to any changes in SSA policy and procedures.


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Update on SSDI Program

On Friday, December 2, 2011, the Social Security Subcommittee of the House Ways and Means Committee held a hearing titled “Securing the Future of the Social Security Disability Insurance Program.” Members of the Subcommittee present for the hearing were the chairman, Sam Johnson (R-TX-3rd), and the ranking member, Xavier Becerra (D-CA-31st), and committee members Rick Berg (R-ND-At Large), Adam Kinzinger (R-IL-11th), and Lloyd Doggett (D-TX-25th).

In his opening statement, Chairman Johnson expressed his concern over the solvency of the program considering t that, since 1970, the numbers of workers paying into the system has increased 70% while the number of people receiving disability benefits has increased by roughly 300%. Chairman Johnson stated that the goal of the hearing was to initiate a much-needed conversation about the challenges facing the program and solutions that can meet the needs of those with disabilities and the workers who support the program through taxes on their hard-earned wages. The chairman concluded his remarks by indicating this would be the first in a series of hearings on this topic.

A three-member panel was called upon to present testimony before the subcommittee. This panel included the chief actuary of the Social Security Administration, Stephen C. Goss, the vice president for income security policy at the National Academy of Social Insurance, Virginia P. Reno, and a resident scholar at the American Enterprise Institute, Andrew G. Biggs. In his testimony, Stephen Goss explained that, although the program could always use improvements, major overhauls are not necessary because the program has sufficient resources now and for the foreseeable future. Mr. Goss also explained that concerns over fraud and abuse are largely unfounded, since there is a significant amount of review and a waiting-period before benefits can be received.

We will keep you updated as Congress continues to review the Social Security Disability Insurance Program.

Groups Urge TSA to Train on Medical Issues

The Interstitial Cystitis Association (ICA) in collaboration with about two dozen other advocacy groups urged the US Department of Transportation Security Administration (TSA) to educate TSA screeners on the special screening considerations for individuals with health issues like interstitial cystitis (IC).

Health advocates representing a range of medical conditions, including cancer, diabetes, gastrointestinal disorders, hepatitis, interstitial cystitis, liver diseases, and others, asked the TSA to develop educational materials, using pictures or demonstration devices, to explain to officers the specific medical issues, as well as the established TSA screening protocol for travelers with these issues.

The ad hoc advocacy coalition also urged TSA to develop “clear, uniformly-applied policies that reasonably limit the use and scope of "pat downs" for these travelers. For instance, such a policy might limit the pat down to the location of a medical device only or dispense with it entirely under specified circumstances.” The letter explained the need for TSA officers to be thoroughly trained on the importance to proactively listen and work collaboratively to preserve the dignity of individuals with special medical issues. The option of inviting patients to help train TSA officers was offered.

Before you travel, also review the TSA’s website which has lots of information for travelers with disabilities and medical conditions:

Bring your ICA Restroom Access Card with you and if you need special screening considerations show the card to the TSA officers. Though the cards will not exempt you from screening, it will help open the conversation!

Response to the Social Security Administration about IC and Disability

The Social Security Administration (SSA) is updating the guidebook used to help their staff process applications for disability. They asked for public comment on the Listing of Impairments for evaluating genitourinary impairments. In 2002, successful lobbying efforts of the ICA resulted in the addition of a section about IC in the guidebook; however, IC was not included as an “impairment” in the Listings. The reason given by SSA was threefold: the cause of IC is unknown, there was no definitive diagnostic test, and the diagnosis is made through a process of exclusion. The delay that many of you report in obtaining approval for disability benefits is likely due to IC not being classified as impairment in the Listings. The ICA took this opportunity for public comment to make the case for including IC in the Listings as impairment.

Our thanks to the many of you who sent in your stories and personal testimony. Because this testimony gets posted on the Social Security website, we included only first name and first initial of your last names in the posted testimony. We corrected a few spelling errors, but otherwise left the testimonies in your own words.

We’ll keep you posted as the discussion continues with SSA.

Read ICA public comment and patient testimonies

Updated Personalized Disability Packet

The ICA recently conducted a thorough literature review and updated quality of life references included on our personalized disability letters.  This information is provided to the courts and other officials as further justification of the disabling impact of IC. You can order a personalized disability packet from the ICA store.

Call for Review of IC Ruling in Federal Registry

The Social Security Administration (SSA) is reviewing the IC disability ruling.  They announced in the Federal Register that they published a call for public opinion on the medical criteria for evaluating genitourinary impairments, which includes IC.  The Advance Notices of Proposed Rulemaking (ANPRMs) arm of SSA seeks public comments by January 11, 2010.  We are working with a subcommittee of the ICA Medical Advisory Board to review and submit comment. Submit your comments to the