SSA Lacks a Formal  and Systematic  Approach for  Identifying CAL  Conditions SSA has in recent years relied on advocates for individuals with certain  diseases and disorders to bring potential CAL conditions to its attention.  However, SSA has not clearly communicated this or provided guidance  on how to make suggestions through its CAL webpage, which  communicates information to the public. Without more explicit  instructions, we noted that advocates may not present information that is  relevant for SSA’s decision-making or that most strongly makes the case  for these conditions to be included on the CAL list. One representative  from an advocacy organization, for example, described meeting with  agency officials and being surprised by SSA’s focus on cancer grades— an indicator of how quickly cancer is likely to grow and spread—as she  was not accustomed to discussing the condition she represents in these  terms. Federal internal control standards state that agencies should use  quality information to achieve their objectives. We concluded that  absent clear guidance to advocates on how to make suggestions through  its CAL webpage, SSA is missing an opportunity to gather quality  information to inform its selection of CAL conditions. In addition, we found that relying on advocates to bring conditions to  SSA’s attention also introduces potential bias toward certain conditions  and the possibility of missing others. Some conditions that are potentially  deserving of CAL consideration may not have advocacy organizations  affiliated with them, and some advocates may be unaware of CAL. As a  result, some conditions may have a better chance of being considered  than other, equally deserving ones that are not proposed, and individuals  with those conditions may have to wait longer to receive approval for  disability benefits. Federal internal control standards state that agencies  should collect complete and unbiased information and consider the  reliability of their information sources. According to some external  researchers who work with SSA, an approach leveraging SSA’s  administrative data may help address the bias that is introduced by only  using advocates. SSA has contracted with the National Institutes of  Health and the National Academies of Sciences, Engineering, and  Medicine for research using SSA administrative data, which has led to the  identification of potential CAL conditions. However, we noted that to date,  the research SSA has contracted has not been sufficiently targeted to  generate more than a small number of additions to the CAL list. In our  August 2017 report, we recommended that SSA develop a formal and  systematic approach to gathering information to identify potential  conditions for the CAL list, including sharing information through SSA’s  website on how to propose conditions for the list and using research that  is directly applicable to identifying CAL conditions. SSA agreed with this  recommendation and has begun to make revisions to its website. We also found that SSA has also not consistently communicated with  advocates who have suggested conditions to add to the CAL list about  the status of their recommendations, leading to uncertainty for some. SSA  officials told us that they provide a written or oral response to advocacy  organizations that have suggested a condition for inclusion on the CAL  list to inform them whether the condition is approved. However, some of  the advocates we spoke to had not received such a response from SSA  and found it challenging to connect with SSA officials to obtain  information about the status of their suggestions. For example, one  representative from an advocacy organization told us that she was unable  to reach SSA officials to obtain any information on the status of her  suggestion despite repeated attempts. In the absence of a response from  SSA, she had resubmitted her condition and supporting documents to  SSA every six months for three years since her initial submission in 2014.  Federal internal control standards state that agencies should  communicate quality information externally so that external parties can  help the agency achieve its objectives. We concluded that without two- way communication between SSA and advocates, advocates are unclear  on the status of their proposed CAL conditions and SSA may be missing  an opportunity to improve the quality of the information it obtains from  advocates. In our August 2017 report, we recommended that SSA  develop formal procedures for consistently notifying those who propose  conditions for the CAL list of the status of their proposals. SSA agreed  with this recommendation. Our review also found that SSA has not developed or communicated  clear, consistent criteria for deciding which potential conditions will be  included on the CAL list. Officials told us that they have informally  considered criteria such as allowance rates—the percentage of claimants  asserting a certain condition who are approved for benefits—when  identifying potential CAL conditions. However, we reviewed 31  assessments of potential CAL conditions prepared by SSA medical  consultants and found that they did not cite consistent criteria. There was  no standard format used for these reports, and SSA does not have a  template, checklist, or guidance—other than the medical listings—that its  staff consult when preparing them. Further, SSA officials have cited  different reasons for not designating conditions as CAL in  communications with those who proposed conditions, which led to  confusion regarding CAL condition criteria for staff from some advocacy  organizations we interviewed. Federal internal control standards state that  agencies should define objectives in specific and measurable terms so  that they are understood at all levels of the agency and performance  toward achieving these objectives can be assessed. To help achieve  these objectives, the standards state that agencies should also  communicate key information to their internal and external stakeholders.  We concluded that absent clear criteria for designating CAL conditions,  advocates and other stakeholders may be confused as to why some  conditions are not included on the CAL list and SSA may miss conditions  that could qualify for CAL. In our August 2017 report, we recommended  that SSA develop and communicate internally and externally criteria for  selecting conditions for the CAL list. SSA agreed with this  recommendation. SSA’s Procedures Do  Not Ensure All Claims  are Accurately  Identified for  Expedited CAL  Processing To identify disability claims for expedited CAL processing, SSA primarily  relies on software that searches for key words in claims. However,  because text provided by claimants may be ambiguous, incomplete,  inaccurate, or misspelled, the software is hindered in its ability to flag all  claimants with CAL conditions and may also flag claimants for CAL  processing that should not be flagged. For example, officials we  interviewed at 5 of the 6 selected DDS offices said that they have seen  claims inaccurately flagged for CAL when the claim text included words  like “family history of ” though the CAL condition was not  asserted by the claimant. In addition, in our claim file review, we found a  claimant asserting a leiomyosarcoma, a soft tissue cancerous tumor that  may be found in organs including the liver, lungs, and uterus, who  misspelled the term as “leiomysarcoma” on the disability claim, which  resulted in the software not flagging the claim as CAL, although liver and  lung cancers are CAL conditions. SSA officials told us that they have not established a feedback loop to  capture observations from DDS officials on weaknesses in the software.  However, DDS officials we spoke with have observed weaknesses in the  software that, if shared, could assist SSA in improving its accuracy in  identifying CAL claims. For example, an official at one DDS office noted  that the software appears to identify CAL conditions using words from the  claim text out of order or without regard to specific phrases. Specifically,  the official stated that some claims with “pancreatitis” or “pancreatic pain”  have been incorrectly flagged for the CAL condition “pancreatic cancer.”  According to federal internal control standards, quality information about  the agency’s operational processes should flow up the reporting lines  from personnel to management to help management achieve the  agency’s objectives. We concluded that absent a mechanism to gather  feedback from DDS offices nationwide, the agency may be missing an  opportunity to obtain important information that could help improve the  software. In our August 2017 report, we recommended that SSA take  steps to obtain information that can help refine the selection software for  CAL claims, for example by using management data, research, or DDS  office feedback. SSA agreed with this recommendation. We also found that DDS offices play an important role in helping to  ensure that claims are accurately flagged for CAL by manually correcting  flagging errors made by the software, but SSA’s guidance on how to  make such corrections does not address when they should occur. For  example, instructions on the mechanical process for removing the flag  based on the DDS examiner’s review of the medical evidence in the  claimant’s file does not indicate how quickly this should be done after  CAL status is clarified. Based on our discussions with officials in the 6  selected DDS offices, we found that some examiners did not understand  the importance of making timely changes to a CAL flag designation to  ensure faster claim processing and accurate tracking of CAL claims. For  example, examiners at one DDS office said that they do not always add  or remove a CAL flag when they determine a claim is erroneously  designated because it adds another step to claim processing and the step  seems unnecessary. Ensuring claims are correctly flagged for or not  flagged for CAL is important because the CAL flag reduces DDS  processing time by about 10 weeks on average compared to the  processing time for all claims, according to SSA data. According to  federal internal control standards, agencies should record transactions in  an accurate and timely fashion, and communicate quality information  throughout the agency. We concluded that without clear guidance on  when to make manual changes, DDS examiners may continue to take  actions that are not timely and may hinder expedited processing and  accurate tracking of CAL claims. In our August 2017 report, we  recommended that SSA clarify written policies and procedures regarding  when manual addition and removal of CAL flags should occur on  individual claims. SSA agreed with this recommendation. In addition, our analysis of SSA’s data shows that DDS offices varied in  their use of manual actions to add the CAL flag to claims that were not  initially flagged for CAL by the software. Specifically, we found that over  half of DDS offices nationwide that processed disability claims in fiscal  year 2016 had one or zero claims with a manually added CAL designation  in that year. In comparison, 5 DDS offices together accounted for over  50 percent of all claims with a manual addition. Such variance could  result in some claimants who assert a CAL condition not receiving  expedited processing because their claims were not flagged for CAL by  the selection software or DDS examiners. We found that because SSA  had not undertaken a study of its manual action procedures on such  claims, it was unclear why this variance existed among DDS offices.  Federal internal control standards state that agencies should establish  and operate monitoring activities to monitor operations and evaluate  results. In our August 2017 report, we recommended that SSA assess  the reasons why the uses of manual actions vary across DDS offices.  SSA agreed with this recommendation. SSA Takes Some  Steps to Ensure  Accurate and  Consistent CAL  Decisions But Does  Not Regularly Update  Condition  Descriptions or  Leverage Data In our August 2017 report, we found that SSA has taken some steps to  ensure the accuracy and consistency of decisions on CAL claims,  including developing detailed descriptions of CAL conditions, known as  impairment summaries, but has not regularly updated the summaries.  These summaries suggest specific medical evidence for the DDS  examiner to obtain to verify the claimant’s asserted CAL condition and  help examiners make decisions about whether to allow or deny a claim.  However, we found that because SSA has not regularly updated the  impairment summaries, nearly one-third are 5 or more years old. Several  advocates (4 of 6) and medical experts (2 of 3) we interviewed suggested  that the impairment summaries should be updated every 1 to 3 years  because medical research and advancements may have implications for  disability determinations. In addition, federal internal control standards  state that as changes in the agency’s environment occur, management  should make necessary changes to the information requirements to  address the modified risks. We concluded that given the pace of  medical research for certain CAL conditions, in the absence of a  systematic and regular mechanism to update CAL impairment  summaries, SSA potentially faces the risk of making inaccurate and  inconsistent disability determinations based on outdated information. In  our August 2017 report, we recommended that SSA develop a schedule  and a plan for updates to the CAL impairment summaries to ensure that  information is medically up to date. SSA agreed with this  recommendation. We also found that SSA does not leverage data it collects to identify  potential challenges to accurate and consistent decision-making on CAL  claims. SSA and DDS officials review some data to monitor CAL claims  processing, such as the total number of CAL claims and claims flagged  for CAL by the selection software, but these efforts do not address the  accuracy and consistency of decisions on CAL claims. In contrast, our  analysis of SSA’s data on outcomes for claims with asserted CAL  conditions suggested that a review of data on allowance and denial rates  for these claims may help identify conditions that are challenging to  accurately and consistently adjudicate. For example, while the vast  majority of claims asserting CAL conditions are allowed—about 92  percent were approved in fiscal year 2016—data we reviewed showed  that there was a lower percentage of claims allowed for certain asserted  CAL conditions. Specifically, SSA denied more than 30 percent of claims  asserting 37 CAL conditions, and 17 of these conditions had denial rates  that were greater than 50 percent. Advocates we spoke to who  represent some of these conditions explained why challenges  adjudicating these claims may exist. For example, officials from one of  these advocacy groups told us that the CAL condition they represent is  frequently confused with a much more common and non-life threatening  condition that is less likely to be allowed. According to federal internal  control standards, management should obtain relevant data based on  identified information requirements, process these data into quality  information that can be used to make informed decisions, and evaluate  the agency’s performance in achieving key objectives and addressing  risks. We concluded that without regular analyses of available data,  SSA is missing an opportunity to ensure the accuracy and consistency of  CAL decision-making. In our August 2017 report, we recommended that  SSA develop a plan to regularly review and use available data to assess  the accuracy and consistency of CAL decision-making. SSA agreed with  this recommendation. Chairman Johnson, Ranking Member Larson, and Members of the  Subcommittee, this concludes my prepared statement. I would be  pleased to respond to any questions you may have at this time. GAO Contact and  Staff  Acknowledgments For questions about this statement, please contact Kathryn A. Larin at  (202) 512-7215 or larink@gao.gov. Contact points for our Offices of  Congressional Relations and Public Affairs may be found on the last page  of this statement. Individuals making key contributions to this testimony  include Rachel Frisk, Assistant Director; Kristen Jones, Analyst-in- Charge; and Michelle Loutoo Wilson. This is a work of the U.S. government and is not subject to copyright protection in the  United States. 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SSA in October 2008 implemented CAL to fast track individuals with certain conditions through the disability determination process by prioritizing their disability benefit claims. Since then, SSA has expanded its list of CAL conditions from 50 to 225. This testimony summarizes the information contained in GAO's August 2017 report entitled SSA's Compassionate Allowance Initiative: Improvements Needed to Make Expedited Processing of Disability Claims More Consistent and Accurate , GAO-17-625 . It examines the extent to which SSA has procedures for (1) identifying conditions for the CAL list; (2) identifying claims for CAL processing; and (3) ensuring the accuracy and consistency of CAL decisions. For its August 2017 report, GAO reviewed relevant federal laws, regulations, and guidance; analyzed SSA data on disability decisions for CAL claims from fiscal years 2009 through 2016 and on CAL claims with manual actions in fiscal year 2016; reviewed a nongeneralizable sample of 74 claim files with fiscal year 2016 initial determinations; and interviewed medical experts, representatives from patient advocacy groups, and SSA officials in headquarters and six DDS offices selected for geographic dispersion and varied CAL caseloads. The Social Security Administration (SSA) does not have a formal or systematic approach for designating certain medical conditions for the Compassionate Allowance initiative (CAL). CAL was established in 2008 to fast-track through the disability determination process claimants who are likely to be approved because they have certain eligible medical conditions. SSA has in recent years relied on advocates for individuals with certain diseases and disorders to bring conditions to its attention for potential inclusion in CAL. However, by relying on advocates, SSA may overlook disabling conditions that have no advocates, potentially resulting in individuals with these conditions not receiving expedited processing. Further, SSA does not have clear, consistent criteria for designating conditions for potential CAL inclusion, which is inconsistent with federal internal control standards. As a result, external stakeholders lack key information about how to recommend conditions for inclusion on the CAL list. To identify disability claims for expedited CAL processing, SSA primarily relies on software that searches for key words in claims. However, if claimants include incorrect or misspelled information in their claims the software is hindered in its ability to flag all claimants with CAL conditions or may flag claimants for CAL processing that should not be flagged. SSA has guidance for disability determination services (DDS) staff on how to manually correct errors made by the software, but the guidance does not address when such corrections should occur. Without clear guidance on when to make manual changes, DDS examiners may not take timely actions and may hinder expedited processing for appropriate claims. SSA has taken some steps to ensure the accuracy and consistency of decisions on CAL claims, including developing detailed descriptions of CAL conditions, known as impairment summaries. These summaries help examiners make decisions about whether to allow or deny a claim. However, nearly one-third of the summaries are 5 or more years old. Experts and advocates that GAO spoke to suggested that summaries should be updated every 1 to 3 years to reduce the risk of SSA making disability determinations using medically outdated information. In addition, GAO found that SSA does not leverage data it collects to identify potential challenges to accurate and consistent decision-making on CAL claims. Without regular analyses of available data, SSA is missing an opportunity to ensure the accuracy and consistency of CAL decision-making.