Report to Congressional Committees

United States Government Accountability Office

GAO

May 2005 SOCIAL SECURITY 

DISABILITY 

INSURANCE 

SSA Actions Could 

Enhance Assistance to 

Claimants with 

Inflammatory Bowel 

Disease and Other 

Impairments 

GAO-05-495 
What GAO Found

United States Government Accountability Office

Why GAO Did This Study

Highlights

Accountability Integrity Reliability

www.gao.gov/cgi-bin/getrpt?GAO-04-495.

To view the full product, including the scope 

and methodology, click on the link above. 

For more information, contact Robert 

Robertson at (202) 512-7215 or 

robertsonr@gao.gov. 

Highlights of GAO-04-495, a report to 

congressional committees 

May 2005

SOCIAL SECURITY DISABILITY 

INSURANCE 

SSA Actions Could Enhance Assistance 

to Claimants with Inflammatory Bowel 

Disease and Other Impairments 

SSA evaluates DI claims involving IBD just as it does all claims, using a fivestep sequential evaluation process to determine whether: (1) the individual is

working and earning an amount exceeding established thresholds, (2) the 

impairment or combination of impairments significantly limits a person’s 

physical or mental ability to perform basic work activities, (3) the 

individual’s impairment meets or equals a pre-established list of the medical 

criteria for impairments considered severe enough to prevent an individual 

from earning wages above the established threshold, (4) the claimant can 

return to previous work based on what the individual can still do in a work 

setting despite physical or mental limitations, or his or her “residual 

functional capacity,” and (5) the claimant can do any work in the economy. 

As claims move through the five-step process, their assessment requires 

additional evidence and increasingly complex judgments on the part of 

adjudicators. For example, at step three, claimants with IBD who are 

diagnosed with Crohn’s disease would meet the medical criteria if their 

weight fell below the minimum on SSA’s weight table. In contrast, to 

determine the residual functional capacity of claimants with IBD at steps 

four and five, SSA adjudicators must assess claimants’ mental and physical 

capacity and make judgments regarding allegations of pain and fatigue. 

Adjudicators at the initial, reconsideration, and hearings levels use the same 

five-step process, although differences exist between the levels that may 

affect decisions. For example, claimants may be represented by an attorney 

or nonattorney at the hearings level. 

While claimants with IBD are somewhat less likely to be allowed DI benefits 

than claimants with other impairments, their experiences applying for 

disability benefits are not unique, and SSA has efforts under way that may 

address some claimant concerns. When we analyzed DI decisions in 2003 by 

decision-making levels, we found that claimants with IBD, like many others, 

experienced lower allowance rates at the initial and reconsideration levels 

compared to the hearings level, although the difference between the levels 

was more pronounced for claimants with IBD. Lower allowance rates at the 

initial levels and higher allowance rates at the hearings level may reflect 

challenges that claimants with IBD share with many other claimants in 

applying for disability benefits. For example, both claimants with IBD and 

other claimants are unlikely to be allowed at step five of the process at the 

initial levels but not at the hearings level. SSA is pursuing efforts that may 

address some claimant concerns. For example, the agency is currently 

updating the medical criteria used for many impairments, including IBD, and 

is proposing changes to its decision-making process that may improve 

consistency between decision-making levels. SSA is also trying to improve 

claimants’ understanding of the disability claims evaluation process, but 

lacks assurance that the majority of claimants who file in person or over the 

phone understand and provide information critical to SSA’s assessment of 

their claims as part of steps four and five of the process. 

Advocates for patients with 

inflammatory bowel disease (IBD) 

believe that the Social Security 

Administration’s (SSA) process for 

determining eligibility for Disability 

Insurance (DI) may treat some 

claimants unfairly. As a result, 

claimants with IBD believe they are 

likely to be denied benefits at the 

initial decision and reconsideration 

levels, making it necessary for 

them to appeal to SSA’s hearings 

level to have their claims allowed. 

This congressionally mandated 

study focuses on (1) how SSA 

evaluates claims involving IBD to 

establish disability under Title II of 

the Social Security Act and (2) 

what unique challenges claimants 

with IBD encounter when applying 

for DI benefits, and what actions, if 

any, SSA has taken to address 

these challenges. 

What GAO Recommends

To help ensure that all claimants 

are informed of and provide SSA 

with information needed to assess 

fairly how impairments limit 

claimants’ ability to work, GAO 

recommends that SSA emphasize 

the types and importance of 

information claimants must submit 

for their claim. SSA agreed with 

GAO’s recommendations, but 

thought that some perspectives 

GAO provided on evaluating IBD 

claims were not relevant, and that 

GAO’s characterization of one 

finding went too far. In response, 

GAO clarified its treatment of these 

issues. 
Page i GAO-05-495 SSA Disability Decision Making 

Letter 1

Results in Brief 2 

Background 5 

SSA Evaluates IBD Claims Using the Same Evaluation Process as 

for All Claims 7 

Claimants with IBD and Other Impairments Face Similar 

Challenges Applying for DI, and SSA Efforts May Address Some 

Claimant Concerns 12 

Conclusions 23 

Recommendations 24 

Agency Comments and Our Evaluation 25 

Appendix I Scope and Methods 27 

Data Sources 27 

Scope 27 

Data Reliability 27 

Methods of Analysis 28 

Appendix II Agency Comments 32 

GAO Comments 37 

Tables 

Table 1: Comparison of Overall Allowance Rates for IBD versus 

Other Impairments 13 

Table 2: Allowance Rates for Claimants with IBD versus Other 

Claimants by Decision-Making Level 14 

Table 3: Allowance Rates for Disability Decisions at Step Three by 

Decision-Making Level 15 

Table 4: Comparison of Allowance Rates at Step Three for IBD 

versus Other Impairments by Decision-Making Level 16 

Table 5: Allowance Rates for Disability Decisions at Step Five by 

Decision-Making Level 17 

Table 6: Types of Comparisons Used in Report for IBD versus 

Other Impairments 30 

Contents 
Page ii GAO-05-495 SSA Disability Decision Making 

Figure 

Figure 1: Five-Step Sequential Evaluation Process Used at Initial, 

Reconsideration and Hearings Levels to Determine 

Disability 8 

Abbreviations 

ADL activities of daily living 

ALJ administrative law judge 

CCS Case Control System 

DDS Disability Determination Services 

DI Disability Insurance 

IBD inflammatory bowel disease 

NAS National Academy of Sciences 

RFC residual functional capacity 

SGA substantial gainful activity 

SSA Social Security Administration 

SSAB Social Security Advisory Board 

SSI Supplemental Security Income 

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Page 1 GAO-05-495 SSA Disability Decision Making 

May 31, 2005 

The Honorable Charles E. Grassley 

Chairman 

The Honorable Max Baucus 

Ranking Minority Member 

Committee on Finance 

United States Senate 

The Honorable Joe Barton 

Chairman 

The Honorable John D. Dingell 

Ranking Minority Member 

Committee on Energy and Commerce 

House of Representatives 

The Honorable William M. Thomas 

Chairman 

The Honorable Charles B. Rangel 

Ranking Minority Member 

Committee on Ways and Means 

House of Representatives 

In recent years, concerns have been raised that the process the Social 

Security Administration (SSA) uses to determine which claimants are 

eligible for Disability Insurance (DI) benefits may place some individuals 

at a disadvantage for receiving the benefits to which they are entitled. For 

example, advocates have recently stressed that the process of qualifying 

for DI benefits may treat some claimants with inflammatory bowel disease 

(IBD) unfairly. They believe that SSA field staff are not familiar with the 

nature of their illness and that the medical criteria used to establish 

disability for IBD patients do not take into account the specifics of their 

illness, such as its episodic and unpredictable nature. As a result, 

claimants with IBD believe that they are likely to be denied benefits at the 

initial decision and reconsideration levels, making it necessary for them to 

appeal to SSA’s hearings level to have their claims allowed. This appeal 

delays the receipt of benefits and may require claimants to pay attorney 

fees. These concerns have arisen in spite of efforts by SSA, which manages 

the DI program and paid out $78.2 billion to 7.9 million beneficiaries in 

2004, to ensure that all claimants are assessed in a consistent manner. 

United States Government Accountability Office

Washington, DC 20548 
Page 2 GAO-05-495 SSA Disability Decision Making 

Partially in response to these concerns, the Congress passed the Research 

Review Act of 2004 (Pub. L. No. 108-427), which mandated that GAO study 

problems encountered by patients with IBD when applying for DI benefits 

under Title II of the Social Security Act and identify possible 

recommendations to improve the application process for these patients.1

This report will discuss (1) how SSA evaluates claims involving IBD to 

establish disability under Title II of the Social Security Act and (2) what 

unique challenges claimants with IBD encounter when applying for DI 

benefits, and what actions, if any, SSA has taken to address these 

challenges. To determine whether claimants with IBD were in fact treated 

differently than claimants with other impairments, we analyzed SSA data 

on all DI decisions made at three decision-making levels (initial, 

reconsideration, and hearings) in 2003 and compared allowance rates for 

claimants with IBD against those for claimants with other impairments.2

We also reviewed a small, nonrepresentative sample of cases to better 

understand how both the claimants and SSA documented claims involving 

IBD. To identify problems IBD patients have encountered, we interviewed 

representatives of IBD patient advocacy groups such as the Crohn’s and 

Colitis Foundation of America and the Digestive Disease National 

Coalition. We discussed these issues with officials at SSA and selected 

stakeholders with perspective on this issue, such as the National 

Association of Disability Examiners, the National Council of Disability 

Determination Directors, and the National Organization of Social Security 

Claimants’ Representatives. To better understand the nature of the 

impairment and the experiences of those in the IBD community who apply 

for DI, we reviewed literature on IBD and SSA’s application process and 

criteria as they pertain to claimants with IBD. We performed reliability 

tests on selected data for calendar year 2003 and found the data 

sufficiently reliable for use in this report. We conducted our work between 

January 2005 and May 2005 according to generally accepted government 

accounting standards. 

SSA evaluates claims involving IBD just as it does all claims, using a fivestep sequential evaluation process to determine if the claimant’s 

impairment or combination of impairments qualifies as a disability under 

 1

The Research Review Act of 2004 also mandated that GAO report on the Medicare and 

Medicaid coverage standards for certain therapies used by patients with IBD. 

2

See appendix I for a detailed description of the methods we used to analyze 2003 data. 

Results in Brief 
Page 3 GAO-05-495 SSA Disability Decision Making 

Title II of the Social Security Act. For all claims, adjudicators establish 

first that the individual is not working and earning an amount exceeding 

established thresholds (engaged in “substantial gainful activity”), and 

second, whether the impairment(s) significantly limits the individual’s 

physical or mental ability to perform basic work activities. Then, at step 

three of the process, the individual’s impairment(s) is compared to preestablished medical criteria in SSA’s Listing of Impairments. Listed 

impairments are considered severe enough to prevent an individual from 

engaging in any gainful activity. For all claims, if the severity and duration 

of the individual’s impairment(s)—as documented by medical 

examinations, laboratory results, and other required evidence—meet or 

are equivalent to (equal) the criteria for an impairment on that list, the 

adjudicator would find the individual to be “disabled” under SSA’s rules 

and would allow the claim. For example, a claimant with IBD who is 

diagnosed with Crohn’s disease and whose weight is below the minimum 

on SSA’s weight table would be “disabled” under SSA’s rules. Claims that 

do not meet or equal the medical criteria move to step four, where 

adjudicators determine if the claimants can do previous work based on 

their “residual functional capacity”; i.e., what they can still do in a work 

setting despite physical or mental limitations, or their “residual functional 

capacity.” In assessing the residual functional capacity of a claimant with 

IBD, for example, SSA might assess the claimant’s ability to stand, sit, and 

lift, as well as his or her mental capacity, pain, and fatigue. If the claimant 

cannot return to previous work, SSA adjudicators move to step five to 

determine if the claimant can do any work in the national economy, based 

on his or her residual functional capacity and the “vocational factors” of 

age, education, and work experience—in addition to residual functional 

capacity. As claims move through the five-step process, the assessments 

generally require additional evidence and involve increasingly complex 

judgments on the part of adjudicators. For example, adjudicators might 

need additional information on daily activities and symptoms, such as 

fatigue, for claimants with IBD whose impairment(s) does not meet or 

equal the medical criteria of one of SSA’s listed impairments. The 

adjudicators will weigh this information along with medical evidence to 

assess how claimants’ impairments might limit their ability to function in a 

work setting. Adjudicators at the initial, reconsideration, and hearings 

levels use the same five-step process, although other differences exist 

between the decision-making levels that may affect how adjudicators 

decide on claims. For example, claimants may introduce new evidence 

and allegations at each stage of the appeals process and are more likely to 

be represented by an attorney or nonattorney during an appeal. 
Page 4 GAO-05-495 SSA Disability Decision Making 

While claimants with IBD are somewhat less likely to be allowed than 

claimants with other impairments, their experiences applying for disability 

benefits are not unique relative to others, and SSA has several efforts 

under way that may address some claimant concerns. When we analyzed 

disability decisions made in 2003 for all decision-making levels combined, 

we found that claimants with IBD had a somewhat lower overall 

allowance rate than that of all other claimants (33 percent versus 

39 percent). When we made this same comparison for each decisionmaking level separately, we found that, much like for other claimants, the 

allowance rate for claimants with IBD was lower at the initial and 

reconsideration levels compared to the hearings level, although the 

difference in allowance rates between levels was greater for claimants 

with IBD. Lower allowance rates at the initial and reconsideration levels 

and higher allowance rates at the hearings level may reflect challenges 

that claimants with IBD share with many other claimants in applying for 

disability benefits. For example, both claimants with IBD and many 

claimants with other impairments are less likely to be allowed at step five 

of the process at the initial and reconsideration levels, but more likely to 

be allowed on this basis at the hearings level. SSA is pursuing efforts that 

may address some of the concerns of individuals with IBD and other 

claimants. For example, the agency is currently updating its Listing of 

Impairments, including the listings for IBD, and is taking into account the 

views of the public in so doing. The agency is also proposing changes to its 

decision-making process that may improve consistency between the initial 

and reconsideration levels and the hearings level. SSA has also taken steps 

to improve all claimants’ understanding of the disability claims evaluation 

process. However, the agency’s recently developed “Disability Starter Kit” 

and other information available to the majority of claimants who apply for 

benefits in person or over the phone do not explain the types and 

importance of information needed to assess claims at steps four and five 

of the process. 

GAO is making several recommendations in this report to the 

Commissioner of Social Security that will help ensure that claimants with 

IBD and other claimants are made aware early in the process of the types 

and importance of information claimants must provide with their 

application. In commenting on the draft of this report, SSA agreed with 

our recommendations but also expressed some concerns. For example, 

SSA stated that our report discussed two issues the agency considered 

irrelevant to our study of DI claimants with IBD—listings for impairments 

other than IBD, and the decline in DI allowances based on medical 

criteria. We modified the text to address some of the agency’s concerns, 

but we believe that a discussion of both of these issues is relevant because 
Page 5 GAO-05-495 SSA Disability Decision Making 

it provides perspective on whether claimants with IBD are treated 

differently than claimants with other impairments. 

DI is the largest federal program providing cash assistance to people with 

disabilities. Established in 1956, DI provides monthly payments to workers 

with disabilities (and their dependents or survivors) under the normal 

retirement age who have enough work experience to qualify for disability 

benefits.3

 The Social Security Act defines disability as the inability to 

engage in any substantial gainful activity by reason of any medically 

determinable physical or mental impairment(s) (hereafter simply referred 

to as “impairment”) which is expected to result in death or which has 

lasted or can be expected to last for a continuous period of not less than 

12 months.4

IBD encompasses two chronic autoimmune diseases of the intestinal tract: 

ulcerative colitis and Crohn’s disease. The two diseases are often grouped 

together as IBD because of their similar symptoms, but each disease has 

very different surgical options, and may be treated with a spectrum of 

diverse medications. Common symptoms of IBD include, but are not 

limited to: abdominal pain, weight loss, fever, rectal bleeding, skin and eye 

irritations, fatigue, and diarrhea. IBD is characterized by intervals of active 

disease, or “flares,” and periods of remission. Although it is estimated that 

as many as one million Americans suffer from a form of IBD, most people 

with IBD are able to work, and few apply for DI benefits. In 2003, less than 

1 percent of DI decisions (nearly 7,000) involved IBD patients. 

To obtain DI benefits, a claimant must provide information through an 

application and adult disability report5

 filed on line, in an interview by 

telephone, or in person at a Social Security office. For claims taken by 

phone or in person, SSA field staff are responsible for assisting the 

claimant in filling out the application form and the adult disability report 

 3

SSA also manages Title XVI of the Social Security Act, which created the Supplemental 

Security Income (SSI) program in 1972. SSI is a means-tested, income assistance program 

that provides monthly payments to adults or children who are blind or who have other 

disabilities and whose income and assets fall below a certain level. 

4

The SSI program uses the same definition of disability as the DI program. 

5

For all disability claims, claimants must fill out the disability application form and the 

adult disability report. 

Background 
Page 6 GAO-05-495 SSA Disability Decision Making 

with complete information and for noting any relevant information about 

the claimant observed during the interview. 

If the claimant meets the nonmedical eligibility criteria, the field staff 

forwards the claim to the appropriate Disability Determination Services 

(DDS) office. DDS staff—generally a team comprising a disability 

examiner and a medical consultant and, sometimes, a vocational 

specialist—review the claimant’s medical and other evidence, obtaining 

additional evidence as needed to assess whether the claimant’s 

impairment satisfies program requirements, and make the initial disability 

decision. If the claimant is not satisfied with this decision, the claimant 

may request a reconsideration of the decision within the same DDS.6

Another DDS team will review the documentation in the case file, as well 

as any new evidence the claimant may submit, and determine whether the 

claimant meets SSA’s definition of disability. 

If the claimant is not satisfied with the reconsideration determination, he 

or she may request a hearing before an administrative law judge (ALJ). 

The ALJ conducts a new review of the claimant’s file, including any 

additional evidence the claimant submitted after the DDS decision. At a 

hearing, the ALJ may hear testimony from the claimant, medical experts 

on the claimant’s medical condition, and vocational experts regarding 

whether the claimant could perform work he or she has done in the past 

or could perform other work currently available in the national economy. 

The majority of claimants are represented at these hearings by an attorney 

or other representative.7

SSA has faced long-standing problems in administering this complex, 

multilevel decision-making process. These problems center around a 

process that can be confusing and unwieldy, with many applicants 

appealing and waiting a long time for a final disability decision. In 

addition, many within and outside of SSA have long believed that 

differences between the adjudication levels might cause inconsistencies in 

 6

In September 2003, SSA’s Commissioner proposed eliminating reconsideration and the 

Appeals Council as part of a large set of revisions to the disability decision-making process. 

7

Under the current process, if the claimant is not satisfied with the ALJ’s decision, he or she 

may request a review of the decision by SSA’s Appeals Council, which is the final 

administrative appeal within SSA. If the Appeals Council denies the request for review or 

the claimant is not otherwise satisfied with the Appeals Council’s decision, the claimant 

may appeal to a federal district court. The claimant can continue legal appeals to the U.S. 

Circuit Court of Appeals, and ultimately to the Supreme Court of the United States. 
Page 7 GAO-05-495 SSA Disability Decision Making 

decision making, in turn resulting in too many claims being initially denied 

and then allowed upon appeal and delaying the time it may take for some 

deserving claimants to receive a final agency decision. Concerned with the 

length of time it takes disability claimants to receive a final agency 

decision, SSA has cited “improving service in its disability programs” as 

one of its highest priorities and established “making the right decision in 

its disability process as early as possible” as one of its strategic objectives. 

SSA evaluates claims involving IBD just as it does all claims, using a 

sequential evaluation process to determine if the claimant’s impairment 

qualifies as a disability under SSA’s definition.8

 This process—which is 

used at all adjudication levels—consists of five distinct steps, wherein the 

claimant’s employment status, medical condition, and functional 

limitations are considered. Figure 1 below gives an overview of how a 

claim moves through the five-step evaluation process. 

 8

The sequential claims evaluation process applies equally to DI and SSI claims. 

SSA Evaluates IBD 

Claims Using the 

Same Evaluation 

Process as for All 

Claims 
Page 8 GAO-05-495 SSA Disability Decision Making 

Figure 1: Five-Step Sequential Evaluation Process Used at Initial, Reconsideration 

and Hearings Levels to Determine Disability 

The first two steps of SSA’s evaluation process allow SSA to screen out 

cases where the claimant clearly does not meet SSA’s definition of 

Step 1:

Is claimant working? If so, are 

earnings above maximum 

allowed?

Claim allowed

Claim denied Yes

Yes

No

Yes Claim allowed

Claim denied No

Claim denied No

Claim denied No

Yes

No

Yes

Step 2:

Is the impairment(s) severe?

Step 3:

Does the severe 

impairment(s) meet or equal 

the medical criteria of an 

impairment in SSA’s Listing of 

Impairments?

Step 4:

Does the severe 

impairment(s) prevent 

claimant from doing past 

relevant work, considering his 

or her residual functional 

capacity?

Step 5:

Does the severe 

iimpairment(s) prevent 

claimant from performing 

other work in the national 

economy, considering 

claimant’s residual functional 

capacity, age, education and 

work experience?

Source: GAO.
Page 9 GAO-05-495 SSA Disability Decision Making 

disability. In step one, field staff determine whether the individual is 

engaged in substantial gainful activity.9

 If so, the individual does not meet 

the definition of disability and the claim is denied. If not, the claim moves 

to step two, and is forwarded to the DDS office, where the adjudicator 

obtains medical and other evidence and considers the severity of the 

impairment. If the impairment does not significantly limit the person’s 

physical or mental ability to perform basic work activities, the impairment 

is considered not severe and the claim is denied. For example, a diagnosis 

of IBD alone is not sufficient; the condition must be severe, i.e., it must 

limit the person’s ability to perform basic work activities, for the claim to 

be considered further. If the impairment is severe, the claim moves to step 

three. 

At step three, the impairment is evaluated to see if it meets or equals in 

severity the medical criteria in SSA’s Listing of Impairments (the 

listings). The listings describe impairments considered severe enough to 

prevent an individual from engaging in any gainful activity. If the severity 

and duration of the claimant’s impairment, as documented by medical 

examinations, laboratory results, and other evidence meet the criteria of a 

listing or is equivalent in severity to a listing, the claim is allowed. For a 

claimant with IBD, there are different ways of meeting or equaling the 

medical criteria. For example, a claimant diagnosed with Crohn’s disease 

whose weight is below the minimum weight on SSA’s established weight 

tables would be allowed. 

For all claimants, if the impairment does not meet or equal the criteria of a 

listing, the adjudicator must assess the claimant’s “residual functional 

capacity” (RFC) to determine what an applicant can still do, despite 

physical and mental limitations, in a regular full-time work setting. The 

claim then moves to step four, where the adjudicator determines whether 

the claimant has the RFC to do any past relevant work. Assessing physical 

RFC requires adjudicators to judge individuals’ ability to physically exert 

themselves in a variety of activities (such as sitting, standing, walking, 

lifting, carrying, pushing, and pulling) and to perform manipulative or 

postural functions (such as reaching, handling, stooping, and crouching). 

Assessing mental RFC requires adjudicators to judge, for example, the 

individual’s ability to understand, remember, and carry out instructions 

and to respond appropriately to people and changes in work situations. 

 9

The 2005 substantial gainful activity (SGA) level for claimants who are not blind is $830; 

SGA for blind claimants is $1,380. 
Page 10 GAO-05-495 SSA Disability Decision Making 

Some IBD claims include allegations of pain and fatigue, which may 

greatly affect the claimant’s RFC. Because these factors cannot be 

measured, the adjudicator may need to assess the “credibility” of the 

claimant’s allegations by comparing such conditions or symptoms to other 

evidence in the file. If the adjudicator determines that in spite of the 

impairment, the claimant’s RFC permits him or her to return to previous 

work, the claim is denied. 

On the other hand, if the adjudicator determines that the claimant’s RFC 

does not permit him or her to return to past relevant work, the claim 

moves to step five, where the adjudicator determines whether the claimant 

could do any other work in the national economy, based on the claimant’s 

RFC and the vocational factors of age, education, and work experience. To 

do this, the adjudicator uses a complex system of rules set out in SSA’s 

regulations, including a grid of medical and vocational factors that 

provides guidance for decision making. There are three grid tables, which 

are based only on exertional limitations (sedentary, light, and medium), 

and each table provides a variety of combinations of age, education, and 

work experience. If, despite the claimant’s impairment and other factors, 

the grid indicates that there are jobs the claimant could do, the claimant 

would be denied; likewise, if the grid indicates that the claimant cannot do 

other work, the claimant would be allowed. However, for the majority of 

disability decisions, the grid is used only as guidance, because many 

claimants have limitations that the grid does not capture. For example, 

severe diarrhea necessitating frequent or extended trips to the bathroom 

may greatly reduce the productivity of claimants with IBD without 

necessarily causing any exertional limitations. 

At any point after step one of the sequential evaluation, if the medical 

evidence initially provided by the claimant or obtained by the DDS is 

insufficient, the adjudicator may re-contact the claimant’s own doctors or 

request a “consultative examination” paid for by SSA. If necessary—for 

example, for conditions or symptoms that are difficult to document or 

measure—the adjudicator may ask the claimant to provide more 

information by, for example, filling out a pain or fatigue questionnaire, or 

an activities of daily living (ADL) form. To corroborate a claimant’s 

allegations of functional limitations, the adjudicator may ask third parties, 

such as friends or relatives, about the claimant’s ability to perform various 

tasks in their daily lives. For a claimant with IBD, for example, the 

adjudicator may need such additional information to corroborate 

allegations of severe pain, fatigue, or diarrhea. 
Page 11 GAO-05-495 SSA Disability Decision Making 

Each step of the sequential evaluation process may require adjudicators to 

obtain and consider more and different types of evidence and to make 

increasingly complex judgments. For example, at the first step, only the 

amount of earnings is needed. In contrast, at steps four and five, 

adjudicators must evaluate medical evidence along with nonmedical 

evidence, including the claimant’s activities of daily living and past work 

experience. In addition, the adjudicator may need to make difficult 

assessments of subjective factors, such as the claimant’s physical or 

mental capacity with respect to a variety of settings and situations, the 

weight to place on treating source opinions, and the claimant’s credibility 

with respect to allegations of pain, fatigue, and other symptoms. 

While the five-step evaluation process is the same at all levels, there are 

differences between the decision-making levels that can affect how 

adjudicators make decisions on cases. For example, a report by the Social 

Security Advisory Board (SSAB) in 200110 identified some fundamental 

differences in the decision-making process between the DDS and hearings 

levels that could potentially affect the overall consistency of disability 

decision making between the two levels, including the following: 

• Most DDS decisions are made without a face-to-face contact with the 

claimant, while the claimant typically appears at an ALJ hearing. 

• Attorneys and other representatives are typically involved at the hearings 

level, but not at the DDS levels. 

• The law allows claimants to introduce new evidence and allegations—of 

either new impairments or worsening of prior impairments over time—at 

each stage of the appeals process. 

• Different quality assurance procedures are applied to the DDS- and 

hearings-level decisions. 

 10Social Security Advisory Board, Charting the Future of Social Security’s Disability 

Programs: The Need for Fundamental Change (Washington, D.C.: January 2001). 
Page 12 GAO-05-495 SSA Disability Decision Making 

While claimants with IBD have somewhat lower allowance rates than 

other claimants, the experiences of these individuals are not unique 

relative to claimants with other impairments. When we compared 

disability decisions for claimants with IBD with those for other claimants, 

we found that much like other claimants, claimants with IBD had lower 

allowance rates at the DDS (initial and reconsideration) levels, but higher 

allowance rates at the hearings level, although the differences between 

levels are more pronounced for claimants with IBD. Allowance rates that 

are lower at the DDS level and higher at the hearings level may reflect 

challenges that claimants with IBD share with other claimants. For 

example, IBD and other claimants face challenges meeting or equaling 

SSA’s medical criteria at step three of the process at all adjudication 

levels. In addition, IBD and other claimants are less likely to be allowed at 

step five of the process at the DDS levels compared to the hearings level. 

Also like many other claimants, claimants with IBD may not be sufficiently 

aware of the types and importance of information they need to provide to 

support an allowance at step five of the process at the DDS levels. SSA is 

pursuing efforts that may address some of the difficulties encountered by 

IBD and other claimants. 

Our analysis showed that, although the experience of claimants with IBD 

is not unique, they tend to be allowed at lower rates compared to many 

other claimants. For example, when we analyzed overall allowance rates,11

we found that claimants with IBD were allowed 33 percent of the time, 

whereas all other claimants were allowed 39 percent of the time. Because 

impairments with low allowance rates and a very large number of claims 

associated with them, such as hypertension or epilepsy, could skew these 

results, we also calculated individual overall allowance rates for IBD and 

216 other impairments to determine whether they were significantly higher 

than, lower than, or similar to the overall allowance rate for claimants 

with IBD.12 As shown in table 1, while we found that the majority of 

impairments had statistically higher overall allowance rates, many other 

impairments had similar or lower overall allowance rates. 

 11To calculate overall allowance rates, we divided the number of allowances at all levels 

(initial, reconsideration, and hearings) by the number of decisions at all levels. 

12The number of impairments we included in this analysis (218, including the two IBD 

impairments, ulcerative colitis, and Crohn’s disease) was determined by identifying all 

primary impairments listed in the 2003 decisions, minus those involving fewer than 100 

decisions in 2003. 

Claimants with IBD 

and Other 

Impairments Face 

Similar Challenges 

Applying for DI, and 

SSA Efforts May 

Address Some 

Claimant Concerns 

While the Experience of 

Claimants with IBD Is Not 

Unique, Their Overall 

Allowance Rate Is 

Somewhat Lower 

Compared to Other 

Claimants 
Page 13 GAO-05-495 SSA Disability Decision Making 

Table 1: Comparison of Overall Allowance Rates for IBD versus Other Impairments 

Other impairments compared 

to IBD 

Number of 

impairments 

Total 

decisions

Significantly higher 122 1,034,956

Statistically similar 29 61,941

Significantly lower 65 885,633

Source: GAO analysis. 

Notes: Analysis based on SSA DI disability decisions in 2003 at DDS and hearings levels. 

Impairments are classified as having higher, similar or lower allowance rates than IBD, based on 

results from statistical models that estimate the direction, size, and significance of the difference 

between each impairment and IBD. Higher and lower impairments are those whose difference from 

IBD is significant at the .05 level. 

When we analyzed allowance rates by adjudication level (DDS versus 

hearings levels), we found that, like many claimants with other 

impairments, claimants with IBD experienced lower allowance rates at the 

DDS and higher allowance rates at the hearings level.13 At the same time, 

we found that the differences between claimants with IBD and all other 

claimants were more pronounced when we analyzed the DDS and hearings 

levels separately than when we combined them. Specifically, at the DDS 

(initial and reconsideration) levels, the allowance rate for claimants with 

IBD was 12 percentage points lower than the average allowance rate for all 

other claimants (see table 2). In contrast, at the hearings level, the 

allowance rate for claimants with IBD was 10 percentage points higher 

than the average rate for all other claimants included in this analysis. 

However, when we computed the overall allowance rate, the two levels 

offset each other, resulting in a difference of only 6 percentage points. 

 13Although the allowance rate at the DDS is lower than the rate at the hearings level, this 

does not mean that fewer people were allowed at the DDS than at the hearings level. In 

fact, of the 2,257 claimants with IBD who were allowed at either level in 2003, 55 percent 

(or 1,241) were allowed at the DDS level. Similarly, of those claimants with other 

impairments who were allowed at either level, 76 percent (584,613) were allowed at the 

DDS level. 
Page 14 GAO-05-495 SSA Disability Decision Making 

Table 2: Allowance Rates for Claimants with IBD versus Other Claimants by 

Decision-Making Level 

Allowance rate 

Decision-making 

level 

Claimants 

with IBD

Other 

claimants

Percentage point difference between 

allowance rates for claimants with 

IBD and other claimants

DDS (initial & 

reconsideration) 22% 34% -12*

Hearings 86% 76% 10*

All levels 33% 39% -6*

Source: GAO analysis. 

Notes: Analysis based on SSA DI disability decisions in 2003 at DDS and hearings levels. 

Asterisks indicate differences between claimants with IBD and claimants with other impairments that 

are significant at the .05 level. The error associated with the estimated allowance rates for claimants 

with IBD is +/- 2 percent or less; the error associated with the estimated allowance rates for all other 

claimants is +/- 1 percent or less.

There may be legitimate reasons for some of the differences in allowance 

rates between adjudication levels and between claimants with IBD and 

claimants with other impairments at the different levels, but pinpointing 

these reasons through data analysis is difficult. Relatively high allowance 

rates at the hearings level could be due to new evidence reflecting new 

impairments or worsening of alleged impairments or the fact that the 

evidence covers a longer period of time, a potentially important factor for 

individuals with episodic impairments like IBD. With respect to variance in 

allowance rates between impairment groups, given the different types and 

characteristics of impairments, it is reasonable that all impairments should 

not necessarily have the same allowance rate, regardless of adjudication 

level. Further, rather than analyzing claims filed in a given year and 

following their outcomes through the various decision-making levels, we 

analyzed data representing decisions at all levels for 1 year. As a result, 

decisions at each level generally involved different claimants with varying 

characteristics (such as age, impairment severity, and work history) that 

influence decisions and might account for some of the differences. To 

analyze whether differences in IBD allowance rates by level are legitimate 

would require a much more complex analysis, following a year of 

applicants through the entire process and controlling for many factors that 

may influence the decision-making process. Even with such an analysis, it 

would be difficult to draw firm conclusions because some key data—such 

as detailed information on changes in the claimant’s medical condition at 

the different decision-making levels—are not readily available for analysis. 
Page 15 GAO-05-495 SSA Disability Decision Making 

Lower allowance rates at the DDS and higher allowance rates at the 

hearings level may reflect challenges that IBD and many other claimants 

encounter in SSA’s disability evaluation process. For example, many 

claimants do not meet or equal SSA’s medical criteria at step three of the 

process, regardless of adjudication level. In addition, claims that do not 

meet or equal the medical criteria at step three and are evaluated at steps 

four and five are less likely to be allowed at step five at the DDS than at 

the hearings level. Finally, claimants may not be made sufficiently aware 

of the importance of documenting how the impairment limits their ability 

to work, information that is critical to steps four and five of the evaluation 

process. This lack of documentation may place them at a disadvantage, 

particularly at the DDS level. 

Both DI claimants with IBD and many other claimants face challenges 

meeting or equaling SSA’s medical criteria at step three of the sequential 

evaluation process when their impairments are evaluated according to 

SSA’s medical criteria. Our analysis showed that the allowance rate at step 

three was low (20 percent or less) for claimants with IBD, as well as for 

claimants with other impairments, regardless of adjudication level (see 

table 3). 

Table 3: Allowance Rates for Disability Decisions at Step Three by Decision-Making 

Level 

Allowance rate at step three 

Decision-making level IBD Other impairments

DDS (initial & reconsideration) 16%* 20%

Hearings 17% 17%

All levels 16%* 20%

Source: GAO analysis. 

Notes: Analysis based on SSA DI disability decisions in 2003 at DDS and hearings levels. 

Allowance rates at step three were derived by dividing allowances at step three by all claims 

considered at step three. Asterisks indicate differences between claimants with IBD and claimants 

with other impairments that are significant at the .05 level. The error associated with the estimated 

allowance rates for claimants with IBD is +/- 2 percent or less; the error associated with the estimated 

allowance rates for all other claimants is +/- 1 percent or less. 

To further analyze whether claimants with IBD experienced similar 

challenges meeting or equaling SSA’s medical criteria at step three relative 

to other claimants, we calculated how many other types of impairments 

had statistically higher, similar, or lower allowance rates overall and by 

adjudication level. As shown in table 4, over 45 percent of other 

Claimants with IBD and 

Other DI Claimants 

Encounter Similar 

Challenges in the 

Evaluation Process 

Challenges Encountered at 

Step Three 
Page 16 GAO-05-495 SSA Disability Decision Making 

impairments had similar or lower allowance rates at step three, regardless 

of adjudication level. 

Table 4: Comparison of Allowance Rates at Step Three for IBD versus Other 

Impairments by Decision-Making Level 

Decision-making 

level 

Allowance rates of 

other impairments 

compared to IBD 

Number of 

impairments

Total 

decisions

DDS (initial & 

reconsideration) Significantly higher 115 710,132 

 Statistically similar 31 109,838 

 Significantly lower 70 918,970 

Hearings Significantly higher 48 64,061 

 Statistically similar 124 36,204 

 Significantly lower 44 143,325

All levels Significantly higher 117 803,653 

 Statistically similar 23 88,237 

 Significantly lower 76 1,090,640 

Source: GAO analysis. 

Notes: Analysis based on SSA DI disability decisions in 2003 at DDS and hearings levels. 

Allowance rates at step three were derived by dividing allowances at step three by all cases 

considered at step three. 

Impairments are classified as having higher, similar or lower allowance rates than IBD, based on 

results from statistical models which estimate the direction, size and significance of the difference 

between each impairment and IBD. Higher and lower impairments are those whose difference from 

IBD is significant at the .05 level. 

Meeting or equaling SSA’s medical criteria may be a problem for many DI 

claimants, although the reasons may vary by impairment. Originally, the 

medical criteria were developed as a way to quickly screen the large 

majority of cases that could be allowed on reasonably objective medical 

tests. However, over the years, SSA has experienced a general decline in 

the percentage of DI claims awarded on the basis of meeting or equaling 

the medical criteria at the DDS level, from 82 percent to 58 percent 

between 1983 and 2000. There are many factors that may have contributed 

to the decline in allowance rates at step three, including advances in 

medicine that can affect the applicability or usefulness of listings, the 

general aging of the baby boomer generation, the mix of impairments over 

the years, the addition of functional criteria to some listings that make it 

more difficult for claimants to meet or equal the listings, changes in or 

clarifications of SSA policies, and economic swings that may affect the 

number or percentage of claimants with very severe disabilities. 
Page 17 GAO-05-495 SSA Disability Decision Making 

In addition, claimants with IBD and other claimants may encounter 

problems meeting or equaling the medical criteria in part because SSA’s 

criteria may not be up to date and complete. According to doctors in the 

IBD community, the IBD medical criteria in step three do not consider 

some symptoms of IBD that may prevent a claimant from working, such as 

severe diarrhea. For example, a claimant diagnosed with IBD may 

experience a level and frequency of diarrhea that precludes working, but 

that symptom is not part of the medical criteria for IBD. In general, we 

previously reported that SSA’s progress in updating its IBD and other 

medical listings has been slow and may not be keeping pace with medical 

advancements.14 However, we did not determine and do not know whether 

updates to non-IBD listings would improve the likelihood of DI claimants 

meeting or equaling SSA’s medical criteria at step three of the process. 

Claimants with IBD and others who are evaluated at steps four and five of 

the sequential evaluation process may also encounter challenges being 

allowed at the DDS versus the hearings level. As shown in table 5, our 

analysis found that step five allowance rates were higher at the hearings 

level than at the DDS levels for both claimants with IBD and claimants 

with other impairments, but the difference is even greater for claimants 

with IBD. 

Table 5: Allowance Rates for Disability Decisions at Step Five by Decision-Making 

Level 

Allowance rate at step five 

Decision-making level Claimants with IBD Other claimants

DDS (initial & reconsideration) 13%* 25%

Hearings 85%* 74%

All levels 27%* 32%

Source: GAO analysis. 

Notes: Analysis based on SSA DI disability decisions in 2003 at DDS and hearings levels. 

Because only denial decisions are possible at step four, allowance rates at step five were derived by 

dividing allowances at step five by all claims considered at steps four and five. Asterisks indicate 

differences between claimants with IBD and claimants with other impairments that are significant at 

the .05 level. The error associated with the estimated allowance rates for claimants with IBD is +/- 2 

percent or less; the error associated with the estimated allowance rates for all other claimants is +/- 1 

percent or less. 

 14GAO, SSA and VA Disability Programs: Re-Examination of Disability Criteria Needed 

to Help Ensure Program Integrity, GAO-02-597 (Washington, D.C.: Aug. 9, 2002).

Challenges Encountered at 

Steps Four and Five 
Page 18 GAO-05-495 SSA Disability Decision Making 

The relatively high allowance rates at step five of the hearings level may be 

due to a number of factors, including the presence of an attorney or 

nonattorney representative at the hearings level or the fact that the 

evidence covers a longer period of time, a potentially important factor for 

individuals with episodic impairments like IBD. As noted earlier, each step 

of the process requires increasingly complex judgments by adjudicators, 

and being represented by an attorney or nonattorney who is familiar with 

SSA’s complex rules and decision-making process may help claimants 

better present their cases. A GAO report in 200315 found that claimants 

who were represented by an attorney (or a person who is not an attorney, 

such as a legal aide, relative, or friend) were more likely to be allowed 

than claimants who had no representative. The report also noted three 

possible reasons for the increased likelihood of being awarded benefits for 

those represented by an attorney: attorneys provide assistance with the 

development of evidence over and above SSA’s efforts to develop 

evidence; attorneys prepare claimants, to improve their effectiveness and 

credibility as witnesses; and attorneys may screen cases to select 

claimants with strong cases. In 2004, for 68.4 percent of all hearings-level 

decisions, the claimant was represented by either an attorney or a 

nonattorney. In contrast, claimants generally do not acquire attorneys or 

other representation to assist them with filing their claims at the DDS 

levels, although they are allowed to do so. 

In the past, SSA and GAO have reported that potential inconsistencies 

between the interpretation and application of standards at the DDS levels 

versus the hearings level might explain higher allowance rates at step five 

at the hearings level.16 For example, GAO reported on SSA studies that 

found that ALJs were more likely than DDS adjudicators to find that 

claimants are credible with respect to allegations of pain, fatigue, and 

other symptoms not identifiable in laboratory tests or confirmable by 

medical observations.17 In addition, past SSA studies have found that the 

different roles that medical staff play at the two levels can affect 

 15GAO, SSA Disability Decision Making: Additional Steps Needed to Ensure Accuracy 

and Fairness of Decisions at the Hearings Level, GAO-04-14 (Washington, D.C.: Nov. 12, 

2003). 

16Secretary of Health and Human Services, Implementation of Section 304 (g) Public Law 

96-265, Social Security Disability Amendments of 1980, the Bellmon Report

(Washington, D.C.: January1982). 

17GAO, Social Security Disability: SSA Must Hold Itself Accountable for Continued 

Improvement in Decision-making, GAO/HEHS-97-102 (Washington, D.C.: Aug. 12, 1997). 
Page 19 GAO-05-495 SSA Disability Decision Making 

allowance rates at step five. Specifically, SSA studies have found that DDS 

medical staff (who generally perform assessments of claimants’ RFC 

themselves) tend to find that claimants had higher capacities to function in 

the workplace than ALJs (who may consult with medical experts, but have 

sole authority to make the RFC finding), even when these different 

adjudicators were given the same cases to review. 

To help address these inconsistencies, SSA began process unification 

efforts in 1994 to ensure that both levels more consistently interpreted and 

applied SSA’s policy guidance. These efforts included creating additional 

policy guidance by publishing rulings and regulations to clarify such policy 

areas as credibility, pain, and the weight given to the opinion of the 

treating physician. However, GAO reported in 200418 that SSA has not 

adequately assessed the impact of its process unification efforts and has 

yet to perform assessments that provide a clear understanding of the 

extent or causes of possible inconsistencies in decisions between 

adjudicative levels. 

Challenges associated with claimants understanding the application 

process and providing critical information to support their claim, 

particularly at steps four and five, are common among claimants, 

regardless of their impairment. Having complete information to support a 

step five allowance is particularly significant because, according to the 

Social Security Advisory Board,19 the percentage of claims allowed at step 

five has more than doubled, from 18 percent of all awards in 1983 to nearly 

42 percent in 2000. However, representatives of stakeholder groups we 

spoke with believe that many claimants, including those with IBD, may be 

unaware of the importance of including detailed information on how their 

impairment limits their ability to work. In fact, some doctors and officials 

in the IBD advocacy community whom we interviewed believed that if a 

claimant’s impairment did not meet or equal the medical listings, the claim 

would be denied. They were unaware of steps four and five in the 

sequential claim evaluation process, where nonmedical factors are 

considered. 

 18GAO, Social Security Administration: More Effort Needed to Assess Consistency of 

Disability Decisions, GAO-04-656 (Washington, D.C.: July 2, 2004). 

19Social Security Advisory Board, Disability Decision Making: Selected Aspects of 

Disability Decision Making (Washington, D.C.: January 2001). 

Difficulties Understanding the 

Application Process 
Page 20 GAO-05-495 SSA Disability Decision Making 

Unless sufficiently prompted by SSA, claimants might not provide enough 

information when they file their claim about how their impairment limits 

their ability to work, which could reduce the likelihood of an allowance at 

step five at the DDS level. In our review of 20 disability claim folders for 

claims decided in 2003, we found that the prior version of the adult 

disability report did not clearly state the importance of providing detailed 

and complete information about how the impairment limited the ability to 

work. In responding to the question on the paper disability report then 

used, some claimants provided only minimal information, sometimes just a 

few words. For example, one claimant responded to the question about 

how his impairment limited the ability to work by saying “pain, limited 

movement.” In another case that was denied at the initial DDS level, the 

claimant provided minimal information concerning how the impairment 

limited work activities. 

In contrast, the new interactive adult disability report on the agency’s Web 

site contains instructions, explanations, and examples that assist 

claimants in filling out the report. For example, in asking about how the 

impairment limits the claimant’s ability to work, the report notes: “This is 

one of the most important pages in the report.” It goes on to explain that, 

“You can help your case by giving us a detailed description of all of your 

conditions, and any symptoms that limit your ability to work. Please do 

not assume that your condition is self-explanatory.” The report also 

provides examples of how to document the conditions and symptoms that 

may limit the ability to work, including the type of information and level of 

detail needed, such as “I have trouble concentrating and have become 

more and more forgetful. My friend at work reminds me about important 

work assignments. Once I forgot to take the daily receipts to the bank. 

Sometimes I can’t remember how to add or subtract.” However, to view 

the on-line instructions, explanations and examples given in the 

interactive adult disability report, a claimant must provide a name and 

legitimate Social Security number, fill out the report, and reach the section 

asking how the impairment limits the ability to work. Further, these more 

detailed instructions and examples are directly available only to those 

claimants who apply on line, which accounts for only about two percent of 

claimants, according to an SSA official. Since the majority of applicants 

apply in person or over the phone, most claimants never see this 

information. 

For the majority of claimants who apply in person or over the phone, SSA 

field staff have the option of reviewing and reading to claimants examples 

that illustrate the types and importance of information requested. 

However, the Social Security Advisory Board and others believe that field 
Page 21 GAO-05-495 SSA Disability Decision Making 

staff lack the time to sufficiently explain program rules and procedures so 

that applicants can understand what items of information they need to 

document their case. SSA does not track, and we did not determine, the 

extent to which SSA field staff read this information to claimants applying 

in person or over the phone. 

Brochures and other information are available on line and routinely 

provided by SSA to claimants when they arrange an appointment to file a 

disability claim. SSA provides this information in order to help ensure that 

claimants can gather the information needed and have it available when 

they meet with the claims representative to complete the application. 

However, this information does not explain the type of information and 

level of detail needed if the impairment does not meet or equal the medical 

criteria at step three and the claim must be decided at steps four and five. 

As a result, claimants may not be sufficiently informed to give SSA enough 

information at the time of application to support the allegation that their 

impairment makes them unable to work. 

Another opportunity exists for the DDS to collect information from 

claimants that is relevant to steps 4 and 5 in the evaluation of the initial 

claim. Specifically, DDS procedures call for the adjudicator to request 

additional information from the claimant, if (1) it is warranted based on 

the disability alleged by the claimant and (2) the information is not already 

in the adult disability report completed by the claimant or by field staff for 

the claimant. Requested information might include responses to a pain or 

fatigue questionnaire or an activities of daily living form. Again, SSA does 

not track, and we did not determine, the extent to which this is done. 

SSA is pursuing efforts that may address some but not all the difficulties 

encountered by claimants with IBD and other claimants. The agency is 

currently updating the medical criteria used at step three for all 

impairments, including IBD and is taking into account the views of the 

public in so doing. However, SSA officials told us that agency rules 

prohibit the discussion of specific changes prior to their publication. The 

process of updating criteria is lengthy, and the updates to the medical 

criteria for IBD may not be completed until late in 2005. 

SSA also has broader efforts under way that may affect future changes to 

medical criteria. For example, SSA has begun holding public meetings to 

discuss changes in medical criteria for certain impairments, such as 

mental conditions and immune disorders, including HIV/AIDS. According 

to SSA officials, this approach allows SSA to obtain valuable input from 

SSA’s Efforts May Address 

Some Challenges Faced by 

Claimants with IBD and 

Others 
Page 22 GAO-05-495 SSA Disability Decision Making 

outside the agency, prior to the drafting of proposed changes to medical 

criteria. In addition, SSA has contracted with the Institute of Medicine, 

part of the National Academy of Sciences (NAS), to conduct a broad 

review of its medical criteria. This review will study such things as 

developing the process for determining when the criteria need to be 

updated, establishing feedback mechanisms to continuously assess and 

evaluate the criteria, and examining the advisability of integrating 

functional assessment into the criteria. 

In addition to changes that affect IBD and other medical criteria, SSA has 

several proposed changes currently under consideration that may improve 

the consistency of decisions between the DDS and hearings levels. 

Specifically, in 2004, GAO reported20 that most SSA stakeholders believe 

the following proposals—announced by the Commissioner in 2003—may 

increase the extent to which DDS and hearings-level adjudicators arrive at 

similar decisions on similar cases 

• requiring DDS adjudicators to more fully develop and document their 

decisions; 

• changing the quality control process for hearings-level decisions in a way 

that makes it more consistent with that of the DDS level; 

• providing both the DDS and the hearings levels with equal access to more 

centralized medical expertise; and 

• requiring ALJs to address agency reports that recommend either denying 

the claim or outlining the evidence needed to fully support the claim. 

SSA is also trying to improve all claimants’ understanding of the disability 

claims evaluation process, through the interactive adult disability report 

and other information available on SSA’s Web site. SSA’s Web site 

contains information on various aspects of the DI program, including the 

evaluation process, and SSA periodically reviews and updates information 

provided on its Web site. However, except for the interactive adult 

disability report, SSA’s Web site does not provide claimants with detailed 

instructions, explanations, and examples to assist them with completing 

the adult disability report. 

 20GAO-04-656. 
Page 23 GAO-05-495 SSA Disability Decision Making 

Moreover, SSA recently developed a Disability Starter Kit, available on the 

Web site and also given to all disability claimants who apply in person or 

by phone, which provides answers to frequently asked questions and 

materials to help them prepare for the disability interview. However, the 

Disability Starter Kit does not include the instructions, explanations, and 

examples available on the interactive adult disability report, for describing 

how an impairment limits the ability to work and the importance of 

providing this information. 

Claimants with IBD believe that SSA tends to initially deny their claims, 

only to allow them at the hearings level, and our analysis of 2003 DI 

decisions confirms that most IBD claims are denied at the initial level, and 

a high rate of claims are allowed upon appeal. However, we also found 

that the experience of claimants with IBD is much like that of claimants 

with many other impairments. This situation may be due in part to a 

general shift away from allowing cases at the DDS level based on meeting 

or equaling the medical criteria in the listings. This in turn results in more 

and more cases being assessed at step five of the process—a step that 

involves complex judgments concerning the RFC of the claimant and 

assessments of factors like pain and the credibility of the claimant. Past 

studies have found that relative to counterparts at the hearings level, DDS 

adjudicators have been less inclined to find that claimants are credible or 

cannot perform past or other work in the national economy, and therefore 

less likely to allow claimants on these bases at step five of the sequential 

process. Inconsistencies in how adjudicators at different levels make 

decisions may help explain the relatively low allowance rates at the DDS 

levels and high allowance rates at the hearings level for IBD and other 

claimants whose impairments do not fit neatly into SSA’s medical criteria 

and generally require adjudicators to perform more complex and 

subjective assessments. SSA has some efforts under way that may address 

some of these issues, but it is too early to gauge success. For example, 

SSA is updating its medical criteria for IBD and other impairments, but 

SSA is unable to discuss any changes prior to publication. SSA also 

contracted with the NAS to conduct a broad review of its medical criteria. 

However, this effort is in its initial stages, and the NAS report is not 

expected until March of 2006. SSA has also proposed several changes to its 

decision-making process that may address inconsistencies in how 

adjudicators at different levels view cases. However, as we previously 

recommended, SSA needs to collect better information to help it 

determine whether problems with inconsistency have been resolved. 

Conclusions 
Page 24 GAO-05-495 SSA Disability Decision Making 

We also found that SSA’s application and claims evaluation process may 

not be well understood by many claimants, and thus some claimants may 

not provide SSA with all the information necessary for their initial 

decisions. SSA’s on-line adult disability report provides useful instructions, 

explanations, and examples to the small percentage of claimants who 

actually fill out the report on line. However, that information cannot easily 

be viewed on SSA’s Web site and is not available in the other materials 

provided to applicants. Further, for the majority of claimants who file in 

person or on the phone, SSA lacks assurance that SSA field staff explain to 

claimants the types and importance of information needed to support a 

claim assessed at steps four and five of the process. As a result, claimants 

may not be providing sufficient information on how their impairments 

prevent them from working, and SSA may be missing the opportunity to 

gather key information for meeting one of its key strategic objectives, that 

is, to make the right decision in the disability process as early as possible. 

To help ensure that claimants with IBD and other claimants are informed 

of and ultimately provide SSA with information critical to a complete 

assessment of their impairment at the earliest possible point in the 

decision-making process, SSA should implement the following three 

recommendations: 

• Update its Web site to include more accessible information that clarifies 

the type and importance of information that claimants must submit for 

steps four and five of the sequential evaluation process. SSA should also 

consider making the information currently in its interactive adult disability 

report—including instructions, explanations and examples—more readily 

available to all claimants on its Web site. 

• Update the Disability Starter Kit—which is provided to all claimants who 

apply by phone or in person—to include an explanation of the types and 

importance of information that claimants must submit for steps four and 

five of the sequential evaluation process. SSA should consider adding 

instructions, explanations, and examples that are currently available in the 

on-line form, to the extent that it is cost-effective to do so. 

• Explore options for ensuring that field office and DDS staff appropriately 

explain and collect the types of information needed to assess how 

claimants’ impairments impact their ability to work. 

Recommendations 
Page 25 GAO-05-495 SSA Disability Decision Making 

We provided a draft of this report to SSA for comment. SSA agreed with 

our recommendations. Specifically, SSA agreed with our first 

recommendation and will take the steps necessary to ensure that, at a 

minimum, the information currently available in the interactive adult 

disability report is available to all claimants on the Web site. In its 

response to our second recommendation, SSA said that it would consider 

the inclusion of information and/or instructions along with other 

suggestions to the Disability Starter Kit that would address the importance 

of obtaining information from the disability applicant about steps four and 

five of the sequential evaluation process, taking into account factors such 

as expense and space. SSA agreed with our third recommendation and will 

continue to emphasize and train DDS and Social Security employees on 

the importance of appropriately explaining all aspects of the disability 

process to claimants and ensuring that the appropriate information is 

provided to and received from the claimants. 

Although SSA agreed with our recommendations, the agency expressed 

concern with two statements in our report. SSA stated that our report 

discussed issues the agency considers irrelevant to our study of DI 

claimants with IBD—the addition of functional criteria to the listings for 

impairments other than IBD and the decline in DI allowances based on 

medical criteria. To respond to agency concerns, we de-emphasized our 

discussion of functional criteria in the listings by simply identifying it as 

one of many reasons for the decline in allowance rates at step three. We 

also clarified in our “Conclusions” section that we were discussing a 

decline in allowances at step three, rather than a decline in allowances 

based on medical criteria. However, we believe that the addition of 

functional criteria to the listings is relevant to our study, as is the decline 

in allowance rates at step three, because they provide perspective on 

whether claimants with IBD are treated differently than claimants with 

other impairments. SSA also expressed concern with how we 

characterized part of our analysis in the “Conclusions” section, and we 

modified the text in the “Conclusions” to be more specific about what our 

analysis found. 

SSA provided additional general comments, which we have included 

(along with our responses to them) in appendix II and addressed in the 

body of our report where appropriate. SSA also provided technical 

comments that we have incorporated in the report as appropriate. 

Agency Comments 

and Our Evaluation 
Page 26 GAO-05-495 SSA Disability Decision Making 

We are sending copies of this report to the appropriate congressional 

committees, the Social Security Administration, and other interested 

parties. We will also make copies available to others on request. In 

addition, the report will be available at no charge on GAO’s Web site at 

http://www.gao.gov. 

If you or your staff have any questions concerning this report, please 

contact me or Michele Grgich, Assistant Director, at (202) 512-7215. You 

may also reach us by e-mail at robertsonr@gao.gov or grgichm@gao.gov. 

Other major contributors to this assignment were Jill D. Yost, 

Ann T. Walker, Corinna Nicolaou, Daniel Schwimer, Doug Sloane, and 

Shana Wallace. 

Robert E. Robertson 

Director, Education, Workforce, 

 and Income Security Issues 
Appendix I: Scope and Methods 

Page 27 GAO-05-495 SSA Disability Decision Making 

To determine whether claimants with IBD were treated differently than 

claimants with other impairments, we analyzed SSA data from 2003 on all 

Disability Insurance (DI) decisions made at three decision-making levels 

(initial, reconsideration, and hearings), and compared allowance rates for 

claimants with IBD to those for claimants with other impairments. This 

appendix describes (1) the sources of the data we used, (2) the scope of 

our analysis, (3) steps we took to ensure data reliability, and (4) our 

methods for analyzing the data. 

We collected information from two sources on all DI decisions made in 

2003 at the three decision-making levels 

• SSA’s 831 file (also referred to as the National Disability Determinations 

Services System), which contains an electronic record of all initial and 

reconsideration decisions made at the DDS and 

• SSA’s Case Control System (CCS), which contains an electronic record of 

all decisions made at the hearings level. 

The Research Review Act mandated GAO to study problems encountered 

by patients with IBD when applying for DI benefits under Title II of the 

Social Security Act. Therefore, we limited our data analyses to decisions 

that involved Title II (Disability Insurance or DI) claims.1

 We restricted our 

analyses to DI decisions that resulted in an allowance or a denial at one of 

the five steps2

 in the sequential process and excluded cases denied for 

such reasons as lack of cooperation or failure to follow prescribed 

treatment, because such denials are not associated with one of the five 

steps. 

We determined that the 831 and CCS files were sufficiently reliable based 

on reliability assessments of specific variables and records pertinent to 

our analyses that we had performed for a previous report.3

 For that report, 

 1

Some of these DI decisions involved a concurrent claim, that is, the claimant filed for DI 

and SSI concurrently and a decision of disability is the same for both programs. 

2

Although most step one denials were made at an SSA field office and were not included in 

our analysis, a small number of claims (1,563, or less than 0.1 percent) were denied at step 

one at the DDS and hearings levels. 

3

GAO, SSA’s Disability Programs: Improvements Could Increase the Usefulness of 

Electronic Data for Program Oversight, GAO-05-100R (Washington, D.C.: Dec. 10, 2004). 

Appendix I: Scope and Methods 

Data Sources 

Scope 

Data Reliability 
Appendix I: Scope and Methods 

Page 28 GAO-05-495 SSA Disability Decision Making 

we reviewed reports by GAO, the SSA Office of Inspector General, and 

SSA contractors on data quality. We also interviewed staff responsible for 

managing and using the data to assess the controls and processes in the 

disability system and performed electronic testing of some variables. In 

addition, for this report, we performed the following: 

• We reviewed records in the 831 and CCS files representing DI decisions 

made in 2003 to identify missing data for the three variables used in this 

study: impairment, decision, and step of the sequential evaluation process 

(i.e., regulation basis code). We did not find any instances of missing data 

for these three variables. 

• We reviewed impairment codes used for 2003 decisions and found records 

that did not indicate a specific diagnosis (e.g., 6490, “impairment 

unknown; insufficient medical evidence”). Because there were a large 

number of records with such impairment codes, we retained them in our 

analyses which compared claimants with IBD with all other claimants. 

After we determined the differences in allowance rates based on the total 

number of decisions regardless of impairment, we conducted a second 

analysis of allowance rates that considered the allowance rate for each 

impairment code. In the second analysis, we used impairment codes for 

which there were 100 or more decisions in 2003, including those 

impairment codes that did not indicate a specific diagnosis. 

• We compared decision outcomes with the regulation basis code indicating 

at which step the decision was made, and found cases with obvious 

conflicts between the decision and the step. Specifically we found records 

that were denied at step three (one case) or allowed at step four (1,021 

cases). The five-step evaluation process does not permit denials at step 

three or allowances at step four, so we excluded these records from our 

analysis. Given the large number of claims (approximately 2 million), the 

error produced by the exclusion of these cases is very small. 

In order to determine whether claimants with IBD were in fact treated 

differently than claimants with other impairments, we compared decision 

outcomes in two ways: (1) claimants with IBD versus all other claimants, 

and (2) IBD impairments versus 216 other individual impairments. 

To determine the extent to which claimants with IBD were allowed at a 

different rate than other claimants, regardless of impairment type, we 

compared the allowance rate of claimants with IBD to that of all other 

claimants. The allowance rate for IBD was calculated by combining 

Methods of Analysis 

Claimants with IBD versus 

All Other Claimants 
Appendix I: Scope and Methods 

Page 29 GAO-05-495 SSA Disability Decision Making 

decisions for the two IBD impairments—Crohn’s disease and ulcerative 

colitis. We then compared the percentage of claims allowed for those 

impairments with the percentage allowed for all other claimants 

combined. We estimated the sampling error associated with these 

percentages, given the size of the samples on which they were based, and 

tested the significance of the difference between them using a simple chisquare statistic. The error associated with the estimated allowance rate for 

claimants with IBD is +/- 2 percent or less. The error associated with 

allowance rates for all other claimants is +/- 1 percent or less. We tested 

the significance of the differences between claimants with IBD and other 

claimants using the .05 level of significance. 

As indicated in table 6 below, a total of nine comparisons were made using 

these calculations. As noted in the table, the denominator for step three 

comparisons included only cases considered at step three (i.e., cases that 

were not denied at steps one and two), whereas the denominator for step 

five included cases considered at steps four and five. The reason for the 

difference is that assessments performed at steps four and five are highly 

inter-related; for example, the RFC assessment performed at step four 

would be used to support a denial at either step four or five, or an 

allowance at step five. As such, it seemed appropriate to consider 

allowances at step five relative to all decisions made at steps four and five. 
Appendix I: Scope and Methods 

Page 30 GAO-05-495 SSA Disability Decision Making 

Table 6: Types of Comparisons Used in Report for IBD versus Other Impairments 

Allowance rate for 

all steps of the 

sequential 

evaluation 

process 

Allowance rate at 

step three 

Allowance rate at 

step five 

DDS (initial and 

reconsideration) level 

DDS allowances 

divided by all DDS 

decisions 

DDS allowances at 

step three divided 

by all cases 

considered at the 

DDS level at step 

three 

DDS allowances at 

step five divided by 

all cases 

considered at the 

DDS level at steps 

four and five 

Hearings level Hearings 

allowances divided 

by all hearings 

decisions 

Hearings 

allowances at step 

three divided by all 

cases considered at 

the hearings level at 

step three 

Hearings 

allowances at step 

five divided by all 

cases considered at 

the hearings level at 

steps four and five 

Overall (all decisionmaking levels) 2003 allowances 

divided by all 2003 

decisions 

2003 allowances at 

step three divided 

by all 2003 

decisions 

considered at step 

three 

2003 allowances at 

step five divided by 

all 2003 decisions 

considered at steps 

four and five 

Source: GAO. 

We performed separate analyses to determine whether claimants with IBD 

had an allowance rate that was different from the allowance rates for 

claimants with other impairments, or whether the allowance rate for 

claimants with IBD was higher than for some other impairments, but lower 

for others. We performed this extra step because we did not know 

whether certain impairments might have a large number of records 

associated with them, and therefore might have greatly influenced the 

allowance rates for claimants with impairments other than IBD. This 

additional analysis reveals where claimants with IBD fall in the range of 

allowance rates by impairment, regardless of the number of claims 

associated with each impairment. 

The allowance rate for claimants with IBD was calculated as we did in the 

first analysis described above. We used this allowance rate as the 

reference category and employed categorical logistic regression models, 

with 216 dummy variables for the other categories of impairments, to test 

the direction and significance of the difference in allowance rates between 

each of the other impairments and IBD. These models used Wald statistics 

and .05 level of significance to test differences, and were able to classify 

IBD Impairment versus 

216 Other Individual 

Impairments 
Appendix I: Scope and Methods 

Page 31 GAO-05-495 SSA Disability Decision Making 

other impairments as having significantly higher, statistically similar, or 

significantly lower allowance rates than IBD. 

A total of four comparisons were made by impairment: overall allowance 

rate (all sequential evaluation steps and decision-making levels combined), 

and step three at the DDS, hearings, and combined levels. We reported the 

overall comparison as an extra test of the results of our first analysis. We 

reported comparisons of impairments at step three because this step 

involves an assessment by SSA adjudicators of medical criteria by 

impairment. Although we also compared impairments at step five, we did 

not report the comparison because we found the results to be consistent 

with our analysis of claimants with IBD versus other claimants. 
Appendix II: Agency Comments 

Page 32 GAO-05-495 SSA Disability Decision Making 

Appendix II: Agency Comments 
Appendix II: Agency Comments 

Page 33 GAO-05-495 SSA Disability Decision Making 

See comments 1 and 2. 

See comments 1 and 2. 

See comment 1. 
Appendix II: Agency Comments 

Page 34 GAO-05-495 SSA Disability Decision Making 

See comment 5. 

See comment 4. 

See comment 3. 

See comments 1 and 2. 
Appendix II: Agency Comments 

Page 35 GAO-05-495 SSA Disability Decision Making 
Appendix II: Agency Comments 

Page 36 GAO-05-495 SSA Disability Decision Making 
Appendix II: Agency Comments 

Page 37 GAO-05-495 SSA Disability Decision Making 

1. In response to SSA’s comments, we de-emphasized our discussion of 

functional criteria in the listings by simply identifying it as one of many 

reasons for the decline in allowance rates at step three. Although we 

agree that functional elements have not been added to the medical 

criteria for the IBD listings, we believe that the addition of functional 

criteria to some listings is relevant to our study because they provide 

perspective on whether claimants with IBD are treated differently than 

claimants with other impairments. We also clarified our text in the 

“Conclusions” section to discuss the decline in allowances based on 

meeting or equaling the medical criteria in the listings (i.e., step three 

allowances), instead of allowances based on medical criteria. In any 

case, we commend SSA for contracting with the Institute of Medicine 

of the National Academy of Sciences to study issues related to the 

listings. 

2. We agree that a shift away from medical criteria toward more 

functional criteria is only one of many possible explanations for the 

downward trend of allowances at step three for DI claimants, and may 

not specifically apply to claimants with IBD. As discussed in comment 

1, we modified our text in the body of the report and in the 

“Conclusions” section to place less emphasis on this particular 

explanation. 

3. We revised the text in the “Conclusions” section to state more 

specifically what our analysis of 2003 decisions found. 

4. We agree that, of those allowed, a larger number of allowances are 

made at the initial level for claimants with IBD as well as for other 

claimants, and we added a footnote to the body of the report 

confirming this. However, SSA’s point that most allowances occur at 

the initial level does not detract from the importance of our discussion 

of relative rates. The low rate of allowances at the DDS level means 

that a large majority of claimants were initially denied, many of whom 

likely did not appeal their initial decision. Our analysis does not allow 

us to say whether the high allowance rate at the hearings level is a 

function of the merit of the appealed cases or, if more of those denied 

claims had been appealed to the hearings level (where more than half 

of claims are allowed), a larger number of claims might have been 

allowed at the hearings level, and therefore claims allowed by the DDS 

would be a smaller percentage of the total number of allowed claims. 

Thus, reporting only the total number of claims allowed at the different 

decision-making levels may not accurately represent the situation. 

5. See comment 3. We did not revise the “Conclusions” section further 

because we believe the report sufficiently identifies a number of 

GAO Comments 
Appendix II: Agency Comments 

Page 38 GAO-05-495 SSA Disability Decision Making 

legitimate reasons that may explain some of the differences in 

allowance rates between adjudication levels. 

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