SSA's Compassionate Allowance Initiative: Improvements Needed to Make Expedited Processing of Disability Claims More Consistent and Accurate
Published: 2017-08-11T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: 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. GAO was asked to review SSA's implementation of CAL.
This report examines the extent to which SSA has procedures for (1) designating CAL conditions, (2) identifying claims for CAL processing, and (3) ensuring the accuracy and consistency of CAL decisions. 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, patient advocates, and SSA officials in headquarters and six DDS offices selected for geographic dispersion and varied CAL caseloads.
section_title: What GAO Found
paragraphs: 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 claimants through the disability determination process who are likely to be approved because they have certain eligible medical conditions. In lieu of a formal process for identifying conditions for the list of CAL conditions, SSA has in recent years relied on advocates for individuals with certain diseases and disorders to bring conditions to its attention. However, by relying on advocates, SSA may overlook disabling conditions for individuals who 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 (see figure). 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 for appropriate claims, and this can also impact the accurate tracking of CAL 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. This leaves SSA at risk of making disability determinations using medically outdated information. In addition, GAO found that SSA does not leverage data it collects to assess the accuracy and consistency of CAL adjudication decisions. Without regular analyses of available data SSA is missing an opportunity to ensure the accuracy and consistency of CAL decision-making.
section_title: What GAO Recommends
paragraphs: GAO is making eight recommendations including that SSA develop a process to systematically gather information on potential CAL conditions, communicate criteria for designating CAL conditions, clarify guidance for manual corrections on CAL claims, update CAL impairment summaries, and use available data to ensure accurate, consistent decision-making. SSA agreed with GAO's recommendations.

section_title: Letter
paragraphs: The Social Security Administration (SSA) oversees two key federal  programs for individuals with disabilities—Disability Insurance (DI) and  Supplemental Security Income (SSI). In December 2016, these  programs provided about $15.7 billion in disability benefits to nearly 17.4  million individuals. In order to be eligible for these programs on the basis  of a disability, applicants must be determined to have a qualifying  disability through a complex, multi-step process that can take months. In  light of these lengthy time frames, SSA in October 2008 implemented the  Compassionate Allowance initiative (CAL). CAL fast-tracks those  applicants through the disability determination process who are likely to  be approved because they have certain medical conditions, such as  specific cancers, Amyotrophic Lateral Sclerosis (ALS), or early-onset  Alzheimer’s disease. Since 2008, SSA has expanded its list of CAL  conditions from 50 to 225, resulting in increasing numbers of individuals  qualifying for disability benefits through CAL. From the initiative’s  inception through the end of fiscal year 2016, SSA had approved more  than 500,000 applications, or claims, for disability benefits through CAL.
In a 2010 audit, SSA’s Office of the Inspector General found that SSA  had not identified all cases that qualified for CAL processing and  processed some cases through CAL that did not qualify. More recently,  concerns have been raised by representatives of disease and disorder  patient advocacy organizations that SSA does not have a transparent  process for identifying conditions for inclusion on the CAL list and its  descriptions of certain CAL conditions may be medically out of date. You  asked us to review several aspects of CAL.
This report 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.
To address these objectives, we reviewed relevant federal laws and  regulations, as well as SSA policies, procedures, training materials, and  other guidance for CAL. We analyzed SSA data on CAL, including the  number of allowance (approval) and denial decisions on disability claims  identified with CAL conditions from fiscal year 2009, when CAL was  implemented, through fiscal year 2016. We also analyzed the number of  CAL claims processed, nationwide and by disability determination  services (DDS) offices, for this period, and claims flagged by staff for  manual addition or removal of the CAL designation in fiscal year 2016.  We assessed the reliability of these data by interviewing knowledgeable  SSA officials and reviewing related documentation and internal controls.  We also conducted a nongeneralizable review of 74 claim files that  received initial determinations in fiscal year 2016 to confirm our  understanding of how claims are identified as CAL automatically by the  selection software and manually by DDS officials, and to further assess  the reliability of CAL management data. As a result of these steps, we  determined these data were sufficiently reliable for our purposes.
To understand procedures related to CAL, we interviewed officials from  SSA headquarters, as well as examiners, supervisors, and quality review  staff in 6 state DDS offices, selected based on geographic dispersion and  varied CAL caseloads. We assessed SSA’s procedures and guidance  against standards for internal control in the federal government. To  gather additional information on implementation of CAL, we interviewed  representatives from nine disease and disorder patient advocacy groups,  selected based on their affiliation with CAL conditions with high allowance  and high denial rates, as well as with conditions that SSA considered but  did not add to the CAL list. We also interviewed relevant medical and  disability experts from the National Institutes of Health (NIH) and the  National Academies of Sciences, Engineering, and Medicine (National  Academies). See appendix I for more details on our scope and  methodology.
We conducted this performance audit from June 2016 to August 2017 in  accordance with generally accepted government auditing standards.  Those standards require that we plan and perform the audit to obtain  sufficient, appropriate evidence to provide a reasonable basis for our  findings and conclusions based on our audit objectives. We believe that  the evidence obtained provides a reasonable basis for our findings and  conclusions based on our audit objectives.
subsections: section_title: Background
subsections: section_title: Overview of SSA’s Disability Programs
paragraphs: To apply for disability benefits through either of SSA’s disability  programs—DI or SSI—individuals submit a claim in-person, by telephone,  mail, or online. The application and related forms ask for a description  of the claimant's impairment (or impairments); sources of the claimant’s  treatment, such as doctors, hospitals, clinics, and other institutions; and  other information related to the disability claim.
SSA assesses the claimant’s non-medical eligibility for benefits and  sends the claim to a state DDS office for a review of the claimant’s  medical eligibility. Although SSA is responsible for the programs, the law  generally calls for initial determinations of disability to be made by state  agencies. An individual meets the definition of disability for these  programs if the individual has a medically determinable physical or mental  impairment that (1) prevents the individual from engaging in any  substantial gainful activity, and (2) has lasted or is expected to last at  least 1 year or is expected to result in death. As part of the medical  determination process, DDS examiners assemble medical and vocational  information for the claim, including medical evidence from the claimant’s  medical providers. If that evidence is unavailable or insufficient to make a  determination regarding the claimant’s eligibility for benefits, the DDS  office will arrange for a consultative exam to obtain additional  information. DDS examiners assess the applicant’s medical condition  against SSA’s Listings of Impairments (medical listings), which contains  medical conditions that have been determined by the agency to be severe  enough to qualify an applicant for disability benefits. Based on this  assessment, a DDS examiner decides whether to medically allow or deny  a claim for DI or SSI benefits.
SSA began CAL in October 2008 with the stated goal of providing  expedited benefit processing to those with certain medical conditions  whose claims are likely to be approved. According to SSA documents,  expedited benefit processing through CAL helps to lessen the emotional  and financial hardship that claimants might otherwise experience as a  result of delays in SSA’s disability process. At the time of its inception, the  initiative was also considered a way to help reduce disability claim  backlogs. SSA has expanded the number of conditions—and thus the  number of claimants—which qualify for CAL over time. When the CAL list  debuted, it contained 50 conditions—25 rare diseases and 25 cancers. In  the years that followed, SSA added more conditions to the list in batches,  eventually expanding it to 225 conditions as of April 2017. (See appendix  II for the current list of CAL conditions.)
CAL claims may be processed more quickly than other claims, in part  because they are given priority status and requests for medical evidence  to substantiate these claims can be expedited. When a claimant submits  a claim for disability benefits, it is flagged as CAL if the claimant’s  description of his or her impairment includes certain key words or phrases  signifying the claimant has a CAL condition. Certain expedited processing  rules apply to claims that are flagged for CAL. These claims are given  priority in disability examiners’ and medical consultants’ queues of  incoming claims, and SSA guidance directs DDS offices to initiate  development within one working day of receiving a CAL claim. Examiners  also use expedited procedures for requesting and following up on  requests for medical evidence for CAL claims, and may only require a  minimal amount of medical evidence, for example, a biopsy report, to  confirm the claimant’s diagnosis of a CAL condition.
To assist examiners in deciding these claims, SSA has developed  detailed descriptions of each of the CAL conditions, known as impairment  summaries. (See appendix III for an example of an impairment summary.)  Among other things, these summaries suggest specific medical evidence  for the examiner to obtain to verify the CAL condition and indicate  relevant medical listings. DDS examiners assess a CAL claimant’s  medical condition against SSA’s medical listings and allow or deny the  claim, per the general disability determination process previously noted.
CAL is one of several expedited processing initiatives SSA has  implemented, consistent with SSA’s focus on the timely processing of  disability claims. For example, whereas CAL applies to claims of certain  medical conditions, SSA’s Terminal Illness (TERI) initiative focuses on  claims involving terminal illnesses, and its Quick Disability Determination  (QDD) initiative focuses on various characteristics of the case file, such  as whether evidence of the claimant’s allegation(s) is expected to be  readily available. Claims flagged for CAL may also be flagged as TERI  or QDD. SSA’s annual performance report for fiscal years 2015 through  2017 states that the agency aims to improve the quality, consistency, and  timeliness of its disability decisions to help achieve its strategic goal of  serving the public through a stronger, more responsive disability program.  SSA, in consultation with the Office of Management and Budget, has  highlighted this objective as a focus area for improvement.
section_title: SSA Lacks a Formal and Systematic Approach for Identifying CAL Conditions
subsections: section_title: SSA Relies on Advocates to Propose New CAL Conditions, But Provides Limited Information to Them on How to Do So
paragraphs: From 2007, the year prior to the initiative’s inception, through 2011, SSA  used public hearings to convene stakeholders and obtain information on  categories of conditions identified by the agency for potential CAL  consideration (see fig. 1). For example, SSA officials said that they  decided to add 12 cardiac-related conditions to the CAL list on the basis  of testimony received during their November 2010 hearing on  cardiovascular disease and multiple organ transplants. SSA officials  said that because of resource limitations, they have not convened a CAL  hearing since March 2011, although they said that since that time, they  have researched and added conditions to the CAL list that were  suggested at the earlier hearings.
Since 2011, SSA has also relied on advocates for individuals with certain  diseases and disorders to bring conditions to the agency’s attention,  rather than proactively and systematically reviewing conditions to identify  potential additions to the CAL list. Of the 137 conditions added to the CAL  list since the agency stopped holding CAL hearings in 2011, 55 conditions  were based on suggestions from the hearings; suggestions from  advocates, including members of the public, account for 51 conditions;  and the remainder resulted from suggestions made by SSA and DDS  staff as well as other researchers.
Although it has relied on advocate suggestions to identify potential  conditions to add to the CAL list in recent years, SSA has not clearly  communicated this or provided guidance on how to make suggestions  through its CAL webpage, which communicates information to the public.  Advocates who are interested in having a disease or disorder considered  for inclusion on the CAL list may contact SSA through a general purpose  CAL email address included on the CAL webpage. While the webpage  acknowledges advocates have previously recommended potential CAL  conditions to SSA, it does not explicitly invite advocates to propose new  conditions. Of representatives from the five advocacy organizations we  interviewed that successfully had conditions added to the CAL list,  representatives from four of these organizations said they had first  learned about CAL through contact with SSA officials and others aware of  the initiative, rather than through SSA’s website. The website also does  not describe what information advocates could present to the agency that  would assist SSA’s consideration of a condition. Without more explicit  instructions, advocates may not provide information that is relevant for  SSA’s decision-making or that most strongly makes their case. 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.  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.
Further, 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, we spoke with  advocates who had not received such a response from SSA and who  found it challenging to connect with SSA officials to obtain information  about the status of their suggestion. 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. Representatives of the  three other advocacy organizations we interviewed who had  unsuccessfully attempted to get conditions added to the CAL list told us  that they did not know if SSA’s decision was final. Federal internal control  standards state that agencies should communicate quality information  externally so that external parties can help the agency achieve its  objectives. Without two-way communication between SSA and  advocates, advocates are unclear on the status of their proposed CAL  conditions and SSA may miss an opportunity to improve the quality of the  information it obtains from advocates.
SSA has met with advocates to share information at the advocates’  request, but has not conducted outreach efforts that are structured to  reach all advocates. Since the last CAL public hearing in 2011, SSA has  hosted teleconferences and webinars on CAL for 14 advocacy  organizations, but because these are provided at the request of advocacy  organizations, advocates need to be already aware of CAL in order to  request them. Since 2007, SSA has also had a partnership with the  National Organization for Rare Disorders (NORD), which serves as a  liaison between SSA and the more than 260 rare disease organizations  NORD represents, as well as affected patients, families, and medical  professionals. NORD officials told us that they have advised their  member organizations on how to approach SSA regarding the potential  addition of conditions to the CAL list and how to most effectively make  their case. For example, one advocate told us that when she was unable  to find information on SSA’s CAL webpage about what information to  include when submitting a condition to SSA for CAL consideration, she  contacted NORD to learn what other member organizations had provided  SSA. However, NORD membership is limited to patient groups that  represent a rare condition and have medical advisors on their board, so  not all advocates that may want to submit a condition to SSA for  consideration have access to this resource.
Relying on advocates to bring conditions to SSA’s attention introduces  potential bias toward certain conditions and the possibility of missing  others. Federal internal control standards state that agencies should  collect complete and unbiased information and consider the reliability of  their information sources. All conditions that are potentially relevant for  CAL consideration may not have advocacy organizations affiliated with  them, and some advocates may be unaware of CAL, potentially resulting  in SSA missing some conditions that are appropriate for 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.
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 NIH and the  National Academies for research using SSA administrative data on  aspects of CAL, including the identification of potential CAL conditions,  and the disability determination process generally. However, to date, SSA  has not contracted for research that is sufficiently targeted to generate  more than a small number of additions to the CAL list. For example, as  part of an interagency agreement with SSA, NIH identified 27 potential  CAL conditions—25 in 2011 and 2 in 2016—but of these, SSA has only  added 4 to the CAL list. NIH identified the potential CAL conditions by  comparing the likelihood of death during the adjudication process for  claimants with non-CAL conditions to those with CAL conditions. Although  likelihood of death relates to the definition of disability, SSA officials said it  is not a factor specifically considered when designating conditions as  CAL, and most of the conditions identified by NIH were not approved for  CAL for various reasons. For example, SSA officials told us that they did  not add some of the recommended conditions to the CAL list because  claims with some of these conditions could not be identified in an  accurate and consistent manner based on the claimant’s description of  his or her condition provided at the time the claim is submitted. In  addition to the NIH research efforts, SSA has a multiyear contract with the  National Academies that is focused on the disability programs’  adjudication process, rather than CAL in particular. In response to  recommendations in a 2010 report from the National Academies, SSA  added 4 conditions to the CAL list.
section_title: SSA Does Not Have Clear, Consistent Criteria for Designating CAL Conditions or a Formal Process for Documenting Its Decisions
paragraphs: SSA has generally described CAL conditions as those that “invariably  qualify as allowances under the  Listing of Impairments based  on minimal objective medical evidence,” according to SSA officials.  However, SSA has not developed or communicated clear, consistent  criteria for designating conditions as CAL conditions. As previously  mentioned, SSA’s website has limited information on CAL, and the  agency does not include information about specific CAL condition  criteria. Officials told us that they have informally considered allowance  rates—the percentage of claimants asserting a certain condition who are  approved for benefits—when identifying potential CAL conditions.  However, SSA officials could not provide any documentation that shows  that they have established an allowance rate minimum for CAL, or that  they track data on allowance rates when assessing potential CAL  conditions. Further, SSA officials and documents we reviewed refer to  certain conditions being a good candidate for CAL if they have a high  probability of being allowed, but cite inconsistent allowance rate cut-offs.  For example, SSA officials told us that they aim to identify conditions for  CAL in which approximately 92 percent of claimants asserting those  conditions are allowed for disability benefits. However, a CAL process  document states that conditions with over a 95 percent allowance rate, as  well as those with 85 to 95 percent allowance rates, are considered for  CAL.
SSA officials also cited their ability to program the selection software used  to identify claims with a CAL condition as a secondary criterion for  including it on the CAL list, although they did not indicate they have  clearly or consistently defined this criterion. SSA officials said this  criterion is important because they aim to reduce the number of false  positives—claims that are erroneously flagged by the software for CAL  processing. However, neither SSA officials nor SSA’s documentation of  the steps taken to evaluate CAL conditions indicated a maximum  threshold for false positives.
SSA also lacks a formal process for documenting its decisions on CAL  conditions, as it does not have a template, checklist, or guidance—other  than the medical listings—that its staff consult when preparing reports on  potential CAL conditions. We reviewed 31 assessments of potential  CAL conditions prepared by SSA medical consultants and found that they  commented on various aspects of the conditions, including ease of  identification through diagnostic testing as well as severity and rarity.  However, there was no standard format used for these reports, and we  were not able to determine the weight given to each of these factors nor  whether all relevant information had been considered. Moreover, the  reports did not cite allowance rates or the ability to program the selection  software to identify these conditions as factors that were considered by  the medical consultants.
Because SSA does not have consistent, clear criteria or clear  documentation of its decision-making, those who have proposed  conditions for CAL are sometimes confused as to why these conditions  are not included on the CAL list. Although SSA officials told us the agency  uses allowance rates and the ability to program the selection software to  identify CAL conditions, SSA officials cited different reasons for not  designating conditions as CAL in communications with those who  proposed the conditions. For example, in an email provided to an  advocacy organization that had attempted to get a condition added to the  CAL list, SSA officials wrote that the condition was not being added  because its symptoms, progression, and severity were variable and  individual in nature. Another advocate told us that based on  conversations with SSA officials, her understanding was that there was  limited space on the CAL list for conditions that were not cancer related,  and that SSA considered the number of people impacted by a condition  as a criterion for CAL. Further, two of the four advocates we spoke with  who unsuccessfully proposed conditions for the CAL list also said that  they did not understand why these conditions were not added to the list  while others were.
Unclear criteria and a lack of formal procedures for documenting  decisions on potential CAL conditions can lead to confusion among  advocates and other stakeholders and also may result in SSA missing  conditions that could qualify for CAL or adding conditions for which claims  are less likely to qualify as allowances or be expedited. 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.
section_title: SSA’s Procedures Do Not Ensure All Claims are Accurately Identified for Expedited CAL Processing
subsections: section_title: Information Provided by Claimants Limits Effectiveness of the Software Program Used to Identify Disability Claims as CAL
paragraphs: SSA relies primarily on selection software to identify CAL disability claims  based on a word-search of the impairment description included in a claim  for benefits. However, the software cannot identify all claimants  asserting CAL conditions in part because text provided by claimants may  be ambiguous, incomplete, or inaccurate. This is because the same  medical condition might be abbreviated or described in different ways by  different claimants. For example, in our review of 74 claim files, we found  one claim with the description “Stage 4 breast cancer/brain/lung/liver/  kidney cancer” that was identified by the selection software for an  advanced stage of lung cancer, among other CAL conditions, whereas  claims describing “lung mass large mediastinal mass with  suspected…brain metastis,” “lung cancer stage 3-4,” and “Lung Cancer  terminal” were not identified by the software for CAL. DDS officials we  interviewed in 4 of 6 offices similarly said that some claims may not  include a complete description of the condition or use the correct medical  terms. A related challenge to identifying CAL conditions with the software  is that some CAL conditions specify a certain disease stage or severity,  but the text in the claim may not provide that information. For example,  claimants with non-small cell lung cancer must be at a stage IIIB or IV  level of severity to qualify for CAL. SSA officials said that some applicants  may not indicate the full extent of their impairments on their disability  claim because they may not have come to terms with the gravity of their  condition.
Because some claimants misspell words describing their conditions, the  selection software may also omit a CAL flag on claims that should be  flagged. For example, in its work with SSA on CAL, NIH found more than  170 misspellings of “adenocarcinoma,” a type of cancerous tumor that is  present in some CAL conditions. In our claim file review, we found a  claimant asserting a leiomyosarcoma, a soft tissue 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’s Office of the Inspector General found this  same issue in its 2010 report on CAL, as 60 percent of sampled claims  appeared to assert a CAL condition but did not use the correct spelling or  provide enough detail for SSA’s systems to automatically identify the  claims as CAL. After the Office of the Inspector General’s report, SSA  took steps to try to address the software’s limitations related to  misspellings. (See fig. 2.)
SSA, through an inter-agency agreement with NIH, initiated an effort in  2016 to improve the current selection software, specifically to reduce the  number of false CAL positives and negatives, among other goals.  According to NIH officials we spoke with, there are necessary tradeoffs  between aiming for precision in the selection software that could exclude  eligible claimants and inclusiveness that could flag claims that are not, in  fact, CAL. As part of their ongoing analysis, NIH officials have identified  strengths, and also limitations of some of the existing rules for the  selection software, such as the key words and phrases that prompt the  software to add a CAL flag, and recommended improvements to enhance  the accuracy of the selection software. In March 2017, SSA officials told  us that they had not yet determined if suggestions NIH had made would  be included in updates to the selection software.
DDS officials we interviewed also indicated that they have noted  instances where some claims are inaccurately flagged for CAL due to  claimants’ descriptions of their conditions in their claims. Officials we  interviewed at 5 of 6 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 the  claimant’s current asserted condition. Further, an official at one DDS  office stated that some claims with “pancreatitis” or “pancreatic pain” have  been incorrectly flagged for the CAL condition “pancreatic cancer.”  The  official noted that the software appeared to identify CAL conditions using  words from the claim text out of order or without regard to specific  phrases. In addition, officials at 4 of 6 DDS offices we spoke with said that  they had processed claims in which they believe representatives or  claimants coached by representatives added “please consider this case  as CAL,” or certain key words, to the claim in an attempt to get the claim  flagged as CAL. While some of the key terms may have been added  appropriately, others may have been added with the intent of having the  software flag a claim as CAL though the claimant was not asserting a  CAL condition. For example, officials with one DDS office said that they  had seen evidence that representatives had coached claimants to include  key words, such as “liver” and “cancer” in their claims in the hopes of  getting them flagged for CAL and allowed for benefits quickly, though the  claimants may not have had “liver cancer,” which is a CAL condition.
Although DDS officials’ observations about weaknesses in the software  could assist SSA in improving the software’s accuracy in identifying CAL  claims, SSA officials told us they have not asked DDS offices for input on  the software, as they have not established a feedback loop to capture  observations from DDS officials on weaknesses in the software.  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. Absent a mechanism to gather feedback from DDS  offices nationwide, the agency may be missing an opportunity to gather  important information that could help improve the software.
section_title: Staff Vary in When and Whether They Add or Remove CAL Status from Pending Disability Claims
paragraphs: DDS offices play an important role in helping to ensure that claims are  correctly flagged for CAL since the selection software’s effectiveness in  identifying claims is impacted by the imprecise information submitted by  some claimants. Further, ensuring claims are correctly 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. SSA guidance directs DDS examiners to take  steps to manually correct the CAL flag if they notice it has been  incorrectly applied or omitted. For example, at one DDS office, examiners  we interviewed said that a case asserting stage 4 cancer was not flagged  for CAL by the software, but after reviewing the medical evidence, the  examiners determined that the claimant had breast cancer—a CAL  condition—and notified the supervisor to manually add a CAL flag to the  claim. Similarly, these examiners described other claims that had been  flagged for CAL by the software, but the medical evidence did not support  the condition reported by the claimant, so they requested their supervisor  remove the CAL flag. (See fig. 3.)
SSA’s guidance includes a description of manual actions that can be  taken by DDS staff to add, modify, remove, or reinstate a CAL flag on a  claim; however, the guidance does not clarify when during the process  these actions should take place, and we found that the point at which  these changes occur during claim processing varies across DDS offices.  For example, the information provided on removing a CAL flag includes  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, but  the guidance does not indicate how quickly this should be done after CAL  status is clarified. SSA officials said that DDS officials have discretion to  determine whether and when to remove a CAL flag, although SSA  guidance advises DDS officials to remove the flag when it is not  applicable. According to internal control standards, agencies should  record transactions in an accurate and timely fashion, and communicate  quality information throughout the agency. However, based on our  discussions with 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 for the  appropriate claims 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. In addition, an examiner at another DDS office told us that  she will delay removal of an erroneous CAL flag from a claim in order to  provide faster service through claims processing. 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 for  appropriate claims and accurate tracking of CAL claims.
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. Specifically, we  noted 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.  According to officials at one DDS office, one potential reason for such  variance is that some examiners may be more knowledgeable about CAL  than others. Specifically, staff said that less experienced examiners are at  risk of not noticing claims in the general queue that should be flagged for  CAL because they are less familiar with CAL conditions. Because SSA  has not undertaken a study of its manual action procedures on such  claims, it is unclear why this variance exists among DDS offices. Such  variance could result in some claimants who assert a CAL condition not  receiving expedited processing because their claims were not identified  by the selection software or DDS examiners as CAL. By not analyzing  these trends across DDS offices, SSA management is missing an  opportunity to identify CAL conditions that more frequently require the  manual addition of a CAL flag. Such an analysis could prompt  consideration of ways to improve the selection software so the software  flags these cases. Federal internal control standards state that agencies  should establish and operate monitoring activities to monitor operations  and evaluate results.
section_title: SSA Takes Some Steps to Ensure Accurate and Consistent CAL Decisions But Does Not Regularly Update CAL Condition Descriptions or Leverage Available Data
subsections: section_title: SSA Has Procedures to Ensure Accurate and Consistent Claim Decisions But Does Not Regularly Update CAL Condition Descriptions
paragraphs: SSA has various procedures in place, including the use of detailed CAL  condition descriptions, to help ensure the accuracy and consistency of  CAL claims decisions. SSA officials stated that the agency directs all DDS  offices to follow the same procedures and to assign experienced  examiners to process CAL claims. Further, to ensure the accuracy of CAL  claims, as with non-CAL claims, both SSA and the DDS offices conduct  quality assurance reviews of claim decisions. SSA also offers guidance  and training. For CAL conditions in particular, because some of these are  rare and seen infrequently by examiners, SSA developed impairment  summaries—detailed descriptions of CAL conditions—to help ensure  accurate and consistent claim decisions. As previously noted, the  impairment summaries suggest specific medical evidence for the  examiner to obtain to verify the claimant’s asserted condition.  Additionally, the summaries describe the CAL condition; provide alternate  names, information on diagnostic testing and coding, and treatment  options and disease progression; and reference relevant medical listings  under which the claim may be allowed. SSA officials said that the  impairment summary presents clear, easy to access, and relevant  information for examiners to consider when making a decision, although  the decision to allow or deny the claim remains with the examiner. (See  figure 4, as well as appendix III for examples.) Officials we interviewed at  6 selected DDS offices said that CAL impairment summaries are a key  tool they consult when making determinations on CAL claims, and several  described these as helping them to make decisions more efficiently. For  example, they said whereas an examiner might typically conduct an  online search to learn about an unfamiliar condition, the summaries are  desk guides that are intended to provide a more authoritative source of  information relevant for evaluating a claim.
Although CAL impairment summaries are a key tool used by examiners to  make a decision on whether to allow or deny a CAL claim, SSA has not  regularly updated the impairment summaries. This is because SSA does  not have a process for regularly updating all of these summaries. As a  result, since the initiative’s inception in fiscal year 2009, about two-thirds  of the summaries have not been updated. Specifically, since fiscal year  2009, SSA has updated impairment summaries for 74 of the current 225  CAL conditions, or about 33 percent. As of March 2017, we found that  impairment summaries for 157 of the 225 conditions, or about 70 percent,  are at least 3 years old, and among these, 69 conditions, or about 31  percent, were 5 or more years old (see fig. 5).
SSA officials said that they update CAL impairment summaries in  conjunction with agency updates to the medical listings used for all  disability claims; however, this approach leaves the majority of CAL  impairment summaries without updates. For example, changes to the  neurological listings in September 2016 prompted SSA to update the 62  CAL condition impairment summaries that reference the neurological  listings. However, according to SSA officials, none of these revisions  were substantive changes to the impairment summaries, but rather  updates to the relevant medical listing numbers. The updates did not  pertain to the descriptions of the specific CAL conditions, such as  information on diagnostic testing, treatment options, and disease  progression, or the suggested medical evidence of record for confirming  the condition’s diagnosis. In general, the medical listings are a broad  guide that applies to all disability claims and does not provide the type of  detailed information found in the impairment summaries. The listings are  organized into 14 major body systems for adults and describe relevant  conditions in each system, but they do not include an exhaustive list of all  relevant conditions. For example, the broader category of  neurodegenerative disorders of the central nervous system is included in  the medical listings, and the CAL condition Huntington’s disease is  mentioned in the listings as an example of this category of impairments.  However, stiff person syndrome, another CAL condition that SSA also  considers a neurodegenerative disorder of the central nervous system, is  not named in the medical listings. According to our analysis of SSA data,  we found that one-quarter of SSA’s CAL conditions directly align with  specific medical listings. As such, three-quarters of the CAL conditions  would not have their impairment summaries updated if SSA relies solely  on this approach.
SSA officials said that they also rely on advocates, as well as DDS and  SSA staff, to bring needed updates to the impairment summaries to the  agency’s attention. However, we found that since 2008, this approach has  led to updates to few conditions. Advocates have provided updated  information to SSA for four CAL conditions and two SSA staff have  prompted updates to two CAL conditions. Furthermore, three of six  advocates we interviewed were unaware that they could suggest updates  to the impairment summaries to SSA, although they had relevant  information or expertise to offer the agency. For example, officials from  one of these advocacy organizations said that since the condition their  advocacy organization represents was added to the CAL list, medical  laboratories have started using a screening tool to rule out the presence  of the condition, and they would have sought to have this information  added to the condition’s impairment summary if they knew such updates  were encouraged. Other external entities also may have relevant  information that could assist SSA in updating the impairment summaries.  For example, consistent with SSA’s approach for updating the medical  listings, two experts who worked with the National Academies on efforts  to improve SSA’s disability determination process suggested that SSA  could use external medical experts to recommend updates to the  impairment summaries for CAL conditions.
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. For example, an official from an advocacy group representing aplastic anemia told us that SSA should  reevaluate impairment summary information for this condition at least  once every 3 years because scientific research for treating this disease is  under continuous development. Officials from an advocacy group  representing early onset Alzheimer’s stated that it is useful to scan for  updates in medical research for this condition once per year because  there is much research underway and there have been changes in how  the condition is diagnosed in recent years. Federal internal control  standards also state that as changes in the agency’s environment occur,  management should make necessary changes to the information  requirements to address the modified risks. 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.
section_title: SSA Does Not Leverage Available Data to Identify Challenges to Making Accurate and Consistent Decisions on CAL Claims
paragraphs: SSA and DDS officials review some data to monitor CAL claims  processing, but these efforts are limited in ensuring accuracy and  consistency of decisions on CAL claims. SSA prepares a monthly report  for SSA’s high-level executives that includes the total number of CAL  claims, claims flagged for CAL by the selection software, and claims  manually flagged by staff as CAL. This report does not provide  information on the accuracy and consistency of CAL claims decisions.  SSA officials from one of the offices that we spoke to that receives the  report said that they were not familiar with it, suggesting it may not be  regularly reviewed. Further, while managers at the 6 DDS offices we  selected use available data to monitor the performance of disability claims  processing, they generally do not use these data to identify issues and  challenges related to CAL claims decisions. For example, officials from 5  of the 6 DDS offices we interviewed said that they do not use available  data to specifically monitor CAL claims. Officials we spoke with in the 1 DDS office that uses available data to monitor CAL said that they review  the timeliness of CAL claims processing to evaluate examiners’ individual  performance, but they did not indicate that the data were used to identify  trends or challenges related to CAL.
SSA officials said that CAL has been viewed as low risk, and  management has confidence in the process in part because of findings  related to CAL claims processing accuracy. The agency conducted a  study in 2009 that found that CAL claims had a higher accuracy rate than  other types of disability claims. According to SSA officials, based on these  results, SSA decided not to perform additional CAL studies. However,  the 2009 study was conducted at a time when there were 50 CAL  conditions, whereas there were 225 CAL conditions as of April 2017. In  addition, as previously noted, SSA relies on the agency’s quality review  sampling procedures to review the accuracy of disability determinations,  including those for CAL claims, on an ongoing basis. Yet, the sample  selected for quality review is intended to reflect all disability decisions,  and therefore, review findings are not generalizable to all CAL claims.
In our analysis of SSA’s available data, which SSA does not leverage to  assess CAL, we found evidence of challenges that may affect the  accurate and consistent adjudication of claims with certain CAL  conditions. For example, our analysis of SSA’s data on denial rates for  CAL conditions showed that certain conditions may be challenging to  accurately and consistently adjudicate, and advocates we spoke to who  represent these conditions explained why challenges may exist. While the  vast majority of CAL claims are allowed—about 92 percent in fiscal year  2016, data we reviewed on claims adjudicated in that year showed 37  conditions for which claims asserting these had a greater than 30 percent  denial rate, including 17 conditions for which claims asserting these had a  greater than 50 percent denial rate. We spoke with officials from  advocacy groups representing two of the asserted conditions with high  denial rates and found that issues with identifying these conditions may  lead to challenges with accurately and consistently adjudicating claims  with those conditions. For example, in fiscal year 2016, 34 percent of  claimants that alleged they had aplastic anemia were denied. Officials  from an advocacy group for aplastic anemia sufferers told us that this  CAL condition is frequently confused with anemia, a much more common  and non-life threatening condition that would be less likely to result in an  allowance decision. They said aplastic anemia is a rare condition,  affecting about 1,500 new patients per year, and is difficult to identify. In  addition, 37 percent of claimants who alleged they had adult non-Hodgkin  lymphoma were denied in fiscal year 2016. Officials from a lymphoma  research and advocacy organization suggested that the CAL condition of  adult non-Hodgkin lymphoma may be too broadly defined in SSA’s  impairment summary. They said that there are 98 sub-types of adult non- Hodgkin lymphoma, so a disability examiner may not make an accurate  disability decision without the appropriate contextual information about  the different sub-types.
Further, we found that denial rate data in combination with processing  time data point to CAL conditions with claims that could be more  challenging to adjudicate. Specifically, our review of SSA data showed a  21 percent denial rate for early-onset Alzheimer’s disease claims for fiscal  year 2016. In addition, in our case file review, we identified three CAL  claims of early-onset Alzheimer’s disease that had longer than average  processing times, in which DDS staff had requested additional  psychological evaluations before making determinations on the claims.
DDS officials we spoke to confirmed challenges adjudicating claims for  this condition exist. Although SSA officials indicated that they select  conditions for the CAL list for which a disability decision can be made on  the basis of minimal objective medical evidence, officials we interviewed  from 2 of 6 DDS offices said claims with early-onset Alzheimer’s disease  can be challenging to adjudicate because the claimant’s medical  evidence is not always sufficient to confirm the diagnosis. For example, a  general practitioner may not have performed a detailed  neuropsychological evaluation when the claimant was diagnosed. When  the medical evidence in a claimant’s file is insufficient on its own to allow  for a determination, DDS officials may request additional medical  evaluations, which adds processing time. If sufficient evidence of a  qualifying disability cannot be obtained, the claim will be denied.
Through our analysis of SSA’s average CAL claim processing time by  DDS office and our discussions with selected DDS offices, we also found  that potential misunderstandings of CAL guidance may cause  inconsistency in the CAL claims decision-making process. For example,  officials from 1 of the 6 DDS offices did not expedite medical information  requests for CAL claims even though SSA guidance instructs DDS offices  to do so. As a result, a claimant at this office will likely experience a  longer wait time for a disability decision than a claimant with the same  CAL condition at a DDS office that follows SSA guidance. Specifically,  this DDS office had an average processing time of nearly 6 weeks for  CAL claims, compared to the national average of about 2 weeks for CAL  claims in fiscal year 2016.
According to federal internal control standards, management should  obtain relevant data based on identified information requirements and  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. SSA collects potentially useful and  informative data on CAL, such as allowance and denial rates for claims  by condition, as well as claims processing time data. Without regular  analyses of available data to identify potential challenges to accurate and  consistent CAL decision-making, SSA risks missing opportunities to  address such challenges through guidance, training, or other methods.
section_title: Conclusions
paragraphs: CAL is viewed positively by SSA and many stakeholders, and appears to  be effectively expediting benefit processing for disability claims receiving  this designation. However, because SSA has considered the initiative to  be working well, it has monitored the initiative less actively, and as a  result, there are weaknesses in CAL that likely result in unintended  consequences. For example, because of SSA’s recent reliance on  advocates to propose new CAL conditions, some conditions may have a  better chance of being considered than other, equally deserving ones that  are not proposed. Further, SSA has not provided clear guidance to  advocates regarding information needed for the agency to consider a  condition, effectively communicated the agency’s decisions to those who  have proposed conditions, nor fully utilized research to identify new CAL  conditions. As a result, SSA is currently missing opportunities to gather  quality information to inform its selection of conditions. In addition, SSA  lacks clear, consistent criteria for designating conditions as CAL, and as a  result, may miss conditions that could qualify for CAL or add conditions  for which claims are less likely to qualify as allowances or be expedited.  Further, because conditions that are designated as CAL allow claimants  with these conditions to receive priority over other claimants, limitations in  the CAL condition selection process raise potential equity considerations.
For those claimants who assert conditions that SSA has designated as  CAL conditions, SSA’s processes for identifying their claims as CAL and  ensuring they receive accurate and consistent decisions also have  limitations that potentially lead to unintended consequences. Because the  agency has missed opportunities to clarify guidance and use available  information to improve both its selection software and manual process for  identifying CAL claims, consistent access to expedited processing for  these claims is hindered. As a result, some who should benefit from  expedited CAL processing do not and others may be benefitting who  should not be. Further, although SSA has provided DDS examiners with  CAL impairment summaries—an important tool to assist them in making  accurate and consistent decisions on CAL claims—because the agency  has not systematically and regularly updated these summaries,  examiners risk making inaccurate and inconsistent disability  determinations based on outdated information. Finally, although SSA  collects useful data on CAL claims, because the agency does not  regularly analyze these data to identify potential challenges to accurate  and consistent CAL decision-making, SSA is missing opportunities to  address such challenges. In the absence of improvements to SSA’s  implementation of CAL, some individuals with CAL conditions will  inadvertently wait longer to receive approval for disability benefits— hindering SSA’s goal of moving these claimants that invariably qualify for  benefits quickly through the process.
section_title: Recommendations for Executive Action
paragraphs: We recommend that the Acting Commissioner of Social Security take the  following actions to ensure expedited processing of disability claims  through CAL is consistent and accurate:  1.  Develop a formal and systematic approach to gathering information to  identify potential conditions for the CAL list, including by sharing  information through SSA’s website on how to propose conditions for  the list and by utilizing research that is directly applicable to identifying  CAL conditions.     2.  Develop formal procedures for consistently notifying those who  propose conditions for the CAL list of the status of their proposals.  3.  Develop and communicate internally and externally criteria for  selecting conditions for the CAL list.  4.  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.   5.  Clarify written policies and procedures regarding when manual  addition and removal of CAL flags should occur on individual claims.   6.  Assess the reasons why the uses of manual actions vary across DDS  offices to ensure that they are being used appropriately.  7.  Develop a schedule and a plan for updates to the CAL impairment  summaries to ensure that information is medically up to date.  8.  Develop a plan to regularly review and use available data to assess  the accuracy and consistency of CAL decision-making.
section_title: Agency Comments
paragraphs: We provided a draft of this report to SSA for review and comment. In its  written comments, reproduced in appendix IV, SSA agreed with our eight  recommendations. SSA officials stated that they are committed to looking  for opportunities to strengthen CAL. In addition, SSA provided technical  comments, which we incorporated as appropriate.
As agreed with your office, unless you publicly announce the contents of  this report earlier, we plan no further distribution until 30 days from the  report date. At that time, we will send copies to the Acting Commissioner  of Social Security, appropriate congressional committees, and other  interested parties. In addition, the report will be available at no charge on  the GAO website at http://www.gao.gov.
If you or your staff have any questions about this report please contact  me 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 report. GAO staff who made key contributions to this report are  listed in appendix V.
section_title: Appendix I: Objectives, Scope, and Methodology
paragraphs: We were asked to review several aspects of the Compassionate  Allowance initiative (CAL). This report examines the extent to which the  Social Security Administration (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.
To better understand CAL and address these objectives, we reviewed  relevant federal laws and regulations, as well as SSA policies,  procedures, training materials, and other guidance for CAL. We reviewed  relevant information, such as transcripts, from SSA’s seven CAL public  hearings held between 2007 and 2011, and information from SSA on the  number and sources of conditions added to the CAL list over time, as well  as the number and sources of updates to the CAL impairment  summaries. We also reviewed 31 assessments of potential CAL  conditions by SSA medical and psychological consultants, as well as  medical policy analysts, including 15 for conditions that were added to the  list and 16 for conditions that were not added to the list. Further, we  reviewed prior relevant SSA, SSA Office of Inspector General, and GAO  reports related to CAL and SSA’s medical listings. We assessed SSA’s  actions against its internal guidance and GAO’s published standards for  internal controls in the federal government.
In addition, we analyzed management information data relevant to CAL;  interviewed SSA and disability determination services (DDS) staff,  advocates, and medical and disability experts with relevant research  organizations; and reviewed a non-generalizable sample of disability  claim files, as discussed more fully below.
subsections: section_title: Management Information Data
paragraphs: We analyzed SSA data on CAL from SSA’s Management Information  Disability database, including the number of allowance (approval) and  denial decisions for disability claims identified with CAL conditions from  fiscal year 2009, when CAL was implemented, through fiscal year 2016.  We analyzed these data to determine the percentage of CAL claims with  allowance decisions, and to identify conditions with high absolute  numbers of claims allowed and denied, as well as those with high  allowance and denial rates.
We also analyzed SSA data on the average processing time of CAL  claims and all claims overall at the initial determination level, as well as  the average processing time of CAL claims for each of the 6 DDS offices  we selected (see below for how we selected these offices). For  processing time data, we focused on the length of time between when a  claim is transferred to the DDS office and when a determination is made.
To learn more about DDS office use of manual actions related to CAL, we  also analyzed the number of CAL claims with manual additions, overall  and by DDS office, from fiscal year 2016 and compared this to the total  number of CAL claims received in that year. Manual actions include  manual additions, removals, modifications and reinstatements of the CAL  flag. For our analyses, we focused primarily on the number of manual  additions of the CAL flag by DDS office.
We assessed the reliability of these data by interviewing knowledgeable  SSA officials and reviewing related documentation and internal controls.  We also conducted a claim file review, described below, to further assess  the reliability of CAL management data. We determined these data were  sufficiently reliable for our purposes.
section_title: Interviews with SSA and DDS Staff
paragraphs: To gather information on how SSA identifies conditions for the CAL list,  identifies claims for CAL processing, and ensures the accuracy and  consistency of CAL decisions, we conducted interviews with staff from  SSA headquarters and select DDS offices. Specifically, we interviewed  staff from SSA’s Office of Disability Policy; Office of Disability  Determinations; Office of Research, Demonstration, and Employment  Support; Office of Applications and Supplemental Security Income  Systems; and the Office of Quality Review. In addition, we conducted  interviews with DDS examiners, supervisors, and quality review staff from  6 DDS offices: Austin, Texas; Bismarck, North Dakota; Columbus, Ohio;  Fairfax, Virginia; Raleigh, North Carolina; and Stockton, California. We  selected these offices primarily based on SSA region (to ensure  geographic dispersion), and to provide variation in the number of CAL  claims receiving initial determinations and the proportion of CAL claims  compared to the DDS’s overall caseload. We also aimed to include  offices with varied numbers of claims that had a CAL flag manually  added. The views of staff from these DDS offices are not generalizable to  all DDS offices nationwide. To gain additional perspectives from DDS and  SSA field office staff, we also interviewed officials from the National  Association of Disability Examiners and the National Council of Social  Security Management Associations, respectively.
section_title: Interviews with Selected Advocates and Medical and Disability Experts
paragraphs: To gather additional information on implementation of CAL, we  interviewed representatives from disease and disorder patient advocacy  groups, selected based on their affiliation with asserted CAL conditions  with high allowance or denial rates, as well as with conditions that SSA  considered but did not add to the CAL list. Specifically, we interviewed  representatives from the Aplastic Anemia and MDS International  Foundation, Alzheimer's Association, Desmoid Tumor Research  Foundation, Huntington’s Disease Society of America, Lymphoma  Research Foundation, M-CM Network, National MPS Society, National  Organization of Rare Disorders, and Parents and Researchers Interested  in Smith-Magenis Syndrome. In total, eight of these nine organizations  had suggested at least one condition to SSA for inclusion on the CAL list.  Five of the nine organizations had one or more condition added by SSA,  and four had one or more condition not added to the list. Another one of  the organizations represented an asserted CAL condition with a high  denial rate; SSA had consulted this organization for information about the  condition in the past, although the group had not proposed the condition  for the list. The views of the selected advocates we interviewed are not  generalizable to all advocates who have interacted with SSA regarding  CAL.
We also interviewed medical experts from the National Institutes of  Health, which has performed work to identify potential conditions for the  CAL list and refinements for the selection software, under an inter-agency  agreement with SSA. SSA has also contracted with the National  Academies of Sciences, Engineering, and Medicine (National Academies)  to recommend improvements to the disability determination process,  among other things, and therefore we interviewed medical and disability  experts who have served on relevant National Academies committees.
section_title: Claim File Review
paragraphs: We conducted a non-generalizable review of 74 claim files with fiscal year  2016 initial determinations to confirm our understanding of how claims are  identified as CAL by the selection software and manually by DDS officials  and to assess the reliability of CAL management data. Our sample  included claims for Disability Insurance (DI) and Supplemental Security  Income (SSI) benefits. We sampled claims from the following four  categories:  1.  claims in which the CAL flag was manually added to the claim;  2.  claims in which the CAL flag was manually removed from the claim;   3.  claims that involved the four asserted CAL conditions with the most  denied claims and denial rates of 20 percent or greater in fiscal year  2016; and  4.  claims with the specific asserted CAL conditions that staff from the six  selected DDS offices we interviewed said were challenging to  adjudicate.
To sample claim files, we worked with SSA staff to create custom data  queries from SSA’s Management Information Disability database to  extract claims that fit the criteria for each of the four categories above and  used a random number generator to select claims from each category.  Where possible, we also accessed information on claims through the  Policy Feedback System, a web-based case management program that is  updated daily with data from SSA’s Structured Data Repository. We only  sampled claims that fit at least one of the above criteria. For example, if  there were no claims at a specific DDS office that fit our criteria for  category 1, we did not record any claims in our data collection instrument  and made a note that no claims existed. The details of our claim sampling  methodology for each category are described below.   1.  Claims in which the CAL flag was manually added to the claim   For category 1, we identified the three conditions that most frequently  resulting in a CAL flag being manually added to a claim. For fiscal year  2016, these were lung cancer (metastases, recurrent, inoperable,  unresectable), acute leukemia, and head and neck cancer (distant  metastases, inoperable, unresectable). For each of the six selected DDS  offices, we randomly sampled two claims, as available, that included any  of these conditions that had the CAL flag manually added, and two  claims, as available, that included any of these conditions that did not  have a CAL flag.   2.  Claims in which the CAL flag was manually removed from the  We repeated the same methodology for category 2 but analyzed the three  conditions that most frequently related to a CAL flag being manually  removed from a claim to better understand potential reasons why a CAL  flag may be applied incorrectly and what information DDS officials might  use to identify this. For fiscal year 2016, these conditions were adult non- Hodgkin lymphoma, early-onset Alzheimer’s disease, and breast cancer  (distant metastasis or recurrent). For each of the six selected DDS  offices, we randomly sampled two claims, as available, that included any  of these conditions that had the CAL flag manually removed, as well as  two claims, as available, that had the CAL flag applied by the selection  software but was not removed. We also randomly sampled one claim  from each DDS office that had one of these three conditions and was  denied, as available.  3.  Claims that involved the four asserted CAL conditions with the  most denied claims and denial rates of 20 percent or greater  proportion of denied claims to denied and allowed claims in FY  2016   For category 3, we used SSA management information data to determine  asserted CAL conditions with 1) the most denied claims adjudicated in FY  2016 and also 2) the high denial rates (20 percent or greater proportion of  denied claims to denied and allowed claims). We selected the first four  conditions that met these criteria: Adult Non-Hodgkin Lymphoma (37  percent), Aplastic Anemia (34 percent), Early-Onset Alzheimer's Disease  (21 percent), and Idiopathic Pulmonary Fibrosis (21 percent). For each of  these conditions, we randomly sampled one allowed claim and two  denied claims that were adjudicated in any DDS office nationwide.   4.  Claims with specific asserted CAL conditions that staff from  selected DDS offices we interviewed said were challenging to  adjudicate   During our interviews with staff from selected DDS offices, we requested  information on particular asserted CAL conditions that each office’s staff  found difficult to adjudicate: Adult Non-Hodgkin Lymphoma (two offices  identified this condition), Leukemia (one office identified this condition),  Head and Neck Cancer (two offices identified this condition), and Early- Onset Alzheimer’s Disease (two offices identified this condition). For  category 4, we queried claims adjudicated at each of the selected DDS  offices specifically asserting the condition or conditions officials at that  office noted as challenging, then we calculated the average number of  days it took to adjudicate claims for this condition at the particular DDS  office. We randomly sampled two claims, as available, that took longer  than the average number of days to adjudicate for each condition.
For each of the sampled claims, we reviewed summary information from  the electronic claim file including: if the claimant was applying for SSI, DI,  or both benefit programs; if the claim was also flagged for the Quick  Disability Determination (QDD) fast-track initiative; the decision  (allowance or denial); claim filing date; decision date; age of the claimant;  and the name, state and region of the adjudicating DDS office. In  addition, we reviewed if there was a CAL flag present, CAL condition  name (as applicable), and if the CAL flag was manually added or  removed. We also reviewed the alleged impairment(s) and our  observations on the Medical Evidence of Record that were recorded in  the claim file.
section_title: Appendix II: Social Security Administration’s 225 Compassionate Allowance Initiative (CAL) Conditions as of April 2017
paragraphs: Appendix II: Social Security Administration’s  225 Compassionate Allowance Initiative (CAL)  Conditions as of April 2017 Adrenal Cancer  with distant  metasteses or inoperable, unresectable, or recurrent  Alexander Disease (ALX) - Neonatal and Infantile  Amyotrophic Lateral Sclerosis (ALS) – Adult  Anaplastic Adrenal Cancer - Adult with distant metasteses or inoperable, unresectable or recurrent  Bladder Cancer with distant metastases or inoperable or unresectable  Breast Cancer with distant metastases or inoperable or unresectable  Carcinoma of Unknown Primary Site           Caudal Regression Syndrome – Types III and IV  Cerebro Oculo Facio Skeletal (COFS) Syndrome  Child Neuroblastoma with distant metastases or recurrent  Chronic Idiopathic Intestinal Pseudo Obstruction  Chronic Myelogenous Leukemia (CML) - Blast Phase  Cornelia de Lange Syndrome – Classic Form  Ependymoblastoma (Child Brain Cancer)
Frontotemporal Dementia (FTD), Picks Disease -Type A- Adult  Galactosialidosis - Early and Late Infantile Types  Hemophagocytic Lymphohistiocytosis - Familial Type  Hypophosphatasia - Perinatal (Lethal) and Infantile Onset Types  Infantile Free Sialic Acid Storage Disease  Junctional Epidermolysis Bullosa -Lethal Type  Late Infantile Neuronal Ceroid Lipofuscinoses  Malignant Brain Stem Gliomas -Childhood  Menkes Disease - Classic or  Infantile Onset Form  Merkel Cell Carcinoma - with metastases  Merosin Deficient Congenital Muscular Dystrophy  Metachromatic Leukodystrophy (MLD) - Late Infantile  Myoclonic Epilepsy with Ragged Red Fibers Syndrome  Neurodegeneration with Brain Iron Accumulation - Type 1 and Type 2  Oligodendroglioma Brain Cancer - Grade III  Ornithine Transcarbamylase (OTC) Deficiency  Orthochromatic Leukodystrophy with Pigmented Glia  Osteosarcoma, formerly known as Bone Cancer - with distant metastases, or inoperable or unresectable  Ovarian Cancer - with distant metastases or inoperable or unresectable  Pelizaeus-Merzbacher Disease - Classic Form  Peripheral Nerve Cancer - metastatic or recurrent  Primary Central Nervous System Lymphoma  Prostate Cancer – Hormone Refractory Disease - or with visceral metastases  Severe Combined  Immunodeficiency - Childhood  Small Cell Cancer (Large Intestine, Prostate, or Thymus)
When a claim has been identified as asserting a CAL condition, the Social  Security Administration’s (SSA) system that transfers claim information  from the field office to the Disability Determination Services (DDS) office  automatically links the claim to a detailed description of this condition,  referred to as an impairment summary. This summary describes the CAL  condition; provides alternate names, information on diagnostic testing and  coding, and treatment options and disease progression; suggests medical  evidence of record for confirming the diagnosis; and references relevant  medical listings, as shown below in table 1 for Amyotrophic Lateral  Sclerosis (ALS). SSA officials said examiners may use their judgment in  evaluating a CAL claim, but that the impairment summary presents  relevant information for them to consider when making a decision. For  example, the description of ALS in the related impairment summary  explains how the condition typically impacts function and presents related  research findings. SSA maintains impairment summaries for each of the  225 CAL conditions. (For a complete list of CAL conditions, see appendix  II.)
section_title: Appendix IV: Comments from the Social Security Administration
section_title: Appendix V: GAO Contact and Staff Acknowledgments
subsections: section_title: GAO Contact
section_title: Staff Acknowledgments
paragraphs: In addition to the contact named above, Rachel Frisk (Assistant Director),  Kristen Jones (Analyst in Charge), Randy De Leon, and Michelle Loutoo  Wilson made key contributions to this report. Additional contributors  include Susan Aschoff, James Bennett, Sherwin Chapman, Alexander  Galuten, Sheila McCoy, Monique Nasrallah, Monica Savoy, and Kelly  Snow.