Public Knowledge About the Social Security Administration's Disability Programs: Findings from the Understanding America Study

Introduction

Statistically, about one in four Americans will become disabled before reaching retirement age (Social Security Administration [SSA], n.d. b). SSA's disability programs exist to protect people who are not able to work at a substantial level because of a severe and long-term health condition. The two disability programs administered by SSA are Social Security Disability Insurance (DI) and Supplemental Security Income (SSI). DI provides benefits to covered workers who become disabled and who have contributed payroll taxes into the Social Security system.¹ SSI provides payments to disabled children and adults whose families have very low income and resources. Individuals may be eligible to receive benefits from both programs simultaneously. Roughly 2 million people apply for benefits from these disability programs each year. It is important for the public not only to be aware that these programs exist, but also to understand basic program aspects such as eligibility rules, the application and disability determination processes, and typical monthly benefit amounts. In this article, we describe results of a survey on public knowledge about the SSA disability programs. Findings from this analysis may be useful to stakeholders who work with people with disabilities, perhaps enabling them to target informational outreach effectively.²

Methods

In June 2021, the University of Southern California's Center for Social and Economic Research began fielding a nationally representative Internet survey of individuals aged 18 or older on knowledge of the SSA disability programs as part of its Understanding America Study (UAS). The SSA disability-program survey constitutes UAS Survey 322. The UAS panel comprises approximately 9,500 respondents who were selected using address-based sampling. Panel members who do not have Internet access are provided an electronic device and Internet service at their residence. Panelists may respond to a selection of surveys each month, for which they receive nominal compensation. The surveys cover a wide range of topics, including health and disability, social attitudes, financial well-being, and participation in social safety-net programs. More details regarding UAS methodology and survey topics may be found in Alattar, Messel, and Rogofsky (2018) and on the UAS website (https://uasdata.usc.edu).

We use descriptive statistics to show the relationships between 20 measures of program knowledge and respondent characteristics. We employ chi-square statistics to test for statistical significance in the observed relationships. We then create a composite measure of program knowledge and respondent characteristics to summarize the relationships, also using chi-square statistics. The composite measure represents an average of the 17 program-knowledge questions that were asked of all respondents.³

In this article, we use UAS Survey 322 results that appear in the UAS comprehensive file, covering June–September 2021 survey responses. At that time, 6,492 respondents had completed the survey (Table 1).⁴ Of these, 23.9 percent reported having a long-term work-limiting disability.⁵ Two-thirds of respondents identified as non-Hispanic White (66.4 percent), 13.4 percent identified as Hispanic, 11.3 percent identified as non-Hispanic Black, 5.6 percent identified as Asian/Pacific Islander, 0.8 percent identified as American Indian/Alaska Native, and 2.6 percent identified as multiracial. Most respondents had completed high school (91.9 percent), and 34.9 percent had attained at least a bachelor's degree.

This article presents survey results indicating those respondents' knowledge of various aspects of the disability programs administered by SSA. The findings address general program awareness and knowledge about the financial eligibility rules, the application and disability determination processes, typical benefit amounts, family benefit availability, health insurance eligibility, and continuation of benefit eligibility. Finally, we discuss the composite measure of program knowledge. Appendix A presents the full text of each of the 20 survey questions, the choices provided as possible answers, and the correct (or salient) responses.

In the Findings section, we present tables showing the survey results and demonstrating how public knowledge about the programs varies from one aspect to another and across demographic groups. The tables also highlight statistically significant differences between the groups.

Findings

We present the survey results in nine subsections, consisting of one subsection for each of eight subject areas and a ninth subsection addressing the composite measure discussed above.

General Awareness of SSA Disability Programs

About three-quarters (75.8 percent) of adults overall are aware that the DI program exists (Table 2, Question 1). Awareness is higher among people with a long-term work-limiting disability (84.8 percent) and increases with age (from 51.2 percent among people aged 18–29 to 89.4 percent among those aged 62–69). Awareness among respondents who are Asian/Pacific Islander (60.3 percent), non-Hispanic Black (70.5 percent), and Hispanic (72.2 percent) is lower than that of non-Hispanic White respondents (78.6 percent). People without a high school diploma are also less likely to know about the DI program than are people with higher levels of education.

Only half of the adult population (49.9 percent) is aware that SSI is a program for low-income people with disabilities (Question 2). As with the DI program, awareness is higher among people with a long-term work-limiting disability (59.7 percent) and it increases with age (from 35.7 percent among people aged 18–29 to 57.4 percent among those aged 62–69). By race/ethnicity, awareness is lowest among Asian/Pacific Islander respondents (42.6 percent), although the difference from other race and ethnicity groups is not significant. People with the highest household income ($100,000 or more) are also less likely to know about the SSI program.

Nearly two in five people (37.0 percent) report that they are interested in learning more about SSA's disability programs (Question 3). People of color are substantially more likely than non-Hispanic White respondents to report interest in learning more. For instance, Asian/Pacific Islander respondents, who tend to have lower levels of program awareness, are 20.8 percentage points more likely than non-Hispanic White respondents to want to learn more (51.3 percent versus 30.5 percent). Respondents in the 30–49 and 50–61 age groups, who are most likely to experience work disabilities and potentially rely on DI and SSI, are also more likely than younger and older respondents to want to learn more.

Overall, relatively few respondents (36.5 percent) report that they know the best sources of information about SSA disability programs (Question 4). People with a long-term work-limiting disability are more likely to report that they know the best sources (44.4 percent), as are those aged 62–69 (45.0 percent).

Together, these findings suggest that some of the groups most likely to need disability benefits, such as people with a long-term work-limiting disability and those in the ages when disability onset is most common, are more likely to be aware of the DI and SSI programs. Still, only a minority of people report that they know the best place to seek information. The relatively low levels of program awareness and high levels of interest in acquiring more information among some race/ethnicity groups (Asian/Pacific Islander, non-Hispanic Black, and Hispanic) suggest that communication efforts targeting these groups may be useful.

Financial Eligibility for Disability Programs

In addition to having a general awareness of SSA's disability programs, potential applicants should understand whether they are financially eligible for DI benefits, SSI payments, or both. Each program has distinct rules for financial eligibility. To qualify for DI benefits, an individual generally must have worked and paid Social Security payroll taxes for at least one-quarter of the period between reaching age 21 and disability onset, including at least half of the 10 years immediately preceding disability onset. Workers who meet the duration-of-work criterion are considered “fully insured” and those who meet the recency-of-work criterion are considered ”disability insured” and thereby financially eligible to receive DI benefits.⁶

Findings from the UAS suggest that considerable portions of the population are unfamiliar with the financial eligibility rules for the DI program. Less than half of respondents (47.0 percent) knew that DI eligibility is not extended to everyone with a Social Security number (Table 3, Question 5), and when presented with a true/false question that overstated the work-duration criteria for fully insured status, only 42.1 percent correctly responded “false” (Question 6). On the other hand, 66.0 percent of respondents correctly identified work-recency requirements for disability-insured status (Question 7). However, note that Question 7 combined the financial eligibility query with a basic statement about DI medical eligibility (“an individual must have a medical condition that meets Social Security definition of disability”), about which public understanding may be more widespread. These relatively low levels of knowledge about financial eligibility suggest that some potentially qualifying individuals may not apply for benefits. Conversely, financially ineligible individuals, not knowing the requirements, may submit applications that will be denied.

The SSI program does not require previous employment, but it sets limits on the amount of income and assets that a financially eligible applicant may have. In 2022, a qualifying applicant may have countable income of no more than $841 per month; if the applicant's spouse also applies for SSI, the couple's income limit is $1,261. Further, the resource limit for eligibility is $2,000 of countable assets for an individual and $3,000 for a couple. UAS Survey 322 does not include any questions specifically about SSI financial eligibility criteria. However, because awareness of the SSI program's existence is 49.9 percent, the share of respondents who know its eligibility criteria is presumably lower still.

Disability Benefit Application Process

In addition to knowing whether they are financially eligible for benefits, it is important for potential beneficiaries to understand the disability application process. For instance, a general understanding of the forms and evidence that must be submitted to demonstrate medical eligibility might facilitate the application process. Likewise, knowledge of the likelihood that an application will be allowed, and how long the application process will take, may help an individual decide whether to apply and make financial plans for the application period.

The first step toward receiving disability benefits is to apply. Nearly all respondents (92.9 percent) know that filing a claim is part of the process (Table 4, Question 8).⁷ Once an individual applies, staff at a Social Security field office processes the application and determines whether the individual is financially eligible. If the applicant is not financially eligible, SSA issues a “technical denial.” If the applicant is financially eligible, the application is sent to a Disability Determination Service (DDS) office, which adjudicates whether the applicant meets SSA's definition of disability. Individuals are considered disabled if they have a medical condition that prevents them from working at a substantial level for at least 12 months. After a DDS determines that an applicant is disabled, the claim is allowed. DI benefits begin 5 months after the onset of an individual's disability in most cases,⁸ and SSI payments begin immediately after a DDS determination of eligibility. If the DDS determines that the applicant is not disabled—a “medical denial”—the individual may appeal the decision. In most cases, the appeal process begins with a reconsideration of the decision at the DDS office. As needed, applicants may take subsequent appeals to an administrative law judge at a Social Security hearing office, to SSA's Appeals Council, and then to a federal court.

In all, the disability determination process may take as little as a few months or as much as 2 years or longer, depending on whether an individual appeals an initial DDS denial. For all DI and SSI applications filed in 2013, the average processing time was 238 days, or about 8 months (Social Security Advisory Board 2017). Half of UAS respondents correctly estimated that the application process typically takes 6 months or more (Question 9). Workers with a long-term disability, older respondents, and those with lower levels of education and income were more likely to correctly estimate the length of application. Asian/Pacific Islander and Hispanic respondents were more likely to estimate that the application process is quicker than it is—with 76.1 and 63.3 percent, respectively, believing that the process takes fewer than 6 months on average.

About 50 percent of DI applicants receive an allowance either at the initial DDS level or upon appeal (SSA 2021, Table 60). When asked to estimate the ultimate allowance rate for DI applicants, 41.1 percent of respondents correctly estimated the rate to within about 10 percentage points (40–60 percent; Question 10). Equal proportions underestimated the allowance rate (29.5 percent) and overestimated it (29.4 percent). Non-Hispanic Black respondents, people with disabilities, and people with lower educational attainment and household income were more likely to underestimate allowance rates. It may be worth exploring whether perceptions about allowance rates affect the decision to apply, particularly among the populations that are more likely to underestimate the allowance rate.

Disability Determination Process

At both the DDS and appeals levels, examiners follow a five-step process to determine whether the applicant's medical condition and diminished work capacity qualify for disability benefits (Wixon and Strand 2013). This process requires applicants to submit evidence of their medical condition, their past and current work, and their ability to engage in different physical and mental aspects of work.⁹

In step 1 of the disability determination process, examiners verify that the applicant is not engaging in “substantial” work, as defined by an earnings level. In 2022, the earnings thresholds that qualify as substantial gainful activity (SGA) are $1,350 per month for individuals who are not blind and $2,260 for blind individuals. If the applicant has earnings that meet or exceed the SGA threshold, the application is denied. If the examiners verify that the applicant is not working at the SGA level, they review the medical evidence provided by the applicant in step 2, in which they determine whether the applicant's medical condition is severe and long-term. A condition is considered severe if it significantly affects the applicant's ability to engage in the basic physical and mental tasks of work. The condition is considered long-term if it expected to last longer than 12 months or to result in death. If the condition is determined to be severe and long-term, the process continues to step 3; if not, the application is medically denied.

In step 3, examiners determine whether the applicant's condition “meets or equals” medical criteria contained in the agency's Listing of Impairments. If the applicant has a single condition that meets the listings' severity criteria or has multiple conditions that combine to equal the listings' criteria, the examiner grants a medical allowance for disability benefits. Applicants who are determined to have a severe, long-term impairment, but whose conditions do not meet or equal the listings' medical criteria, receive a work history evaluation in step 4 of the determination process.

At step 4, examiners evaluate whether the applicant has the physical and mental capacity to resume work in any recently held jobs. If so, the application is denied. For applicants who cannot perform their previous work, disability examiners consider, in step 5, whether they can perform any work in the national economy based on their physical and mental capacity, accounting also for other characteristics such as age, education, and skilled work experience. If the examiner finds that the applicant can engage in a significant number of jobs, the applicant is deemed ineligible for benefits. If the claimant is found to be unable to make the adjustment to any other work, considering his or her residual functional capacity, age, education, and work experience, then the applicant is eligible for benefits (SSA 2018).

The public's knowledge about these five steps varies. For step 1, 60.9 percent of a subpanel consisting of respondents who have ever applied for DI benefits or SSI payments are aware that individuals who work but have earnings beneath the SGA threshold may retain benefit eligibility (Table 5). Awareness of this rule is substantially lower among Asian/Pacific Islander and Hispanic program participants, however.

For step 2, about half of the population (51.0 percent) knows that people with short-term disabilities—that is, disabilities expected to last less than 12 months—do not qualify for DI benefits (Table 6, Question 12). Two-thirds of respondents (66.0 percent) know that the consideration of medical conditions is part of the determination process, which is relevant to step 3 (Question 13). We find little evidence that awareness of steps 2 and 3 vary by individual characteristics.

For step 4, 57.1 percent of the population correctly reported that benefits will be denied if the applicant is judged to be able to perform previous work (Question 14). Awareness of step 4 is higher among people with a long-term work-limiting disability (62.4 percent) and people who are widowed (66.3 percent) or divorced (63.1 percent) but is lower among respondents who are American Indian/Alaska Native (40.8 percent), Asian/Pacific Islander (50.7 percent), and non-Hispanic Black (51.6 percent) than those who are non-Hispanic White (59.5 percent).

Awareness is higher for step 5 (80.9 percent, Question 15) than for any other. Older respondents are especially likely to know that disability benefits will be denied if the applicant can perform other work in the national economy. Awareness is lower among respondents who are non-Hispanic Black (72.3 percent), Hispanic (74.3 percent), and Asian/Pacific Islander (76.2 percent) than those who are non-Hispanic White (84.1 percent).

Typical Benefit Amounts

To enable financial planning, potential disability-program beneficiaries are well-served to be aware of the amount of monthly income they may receive. Most DI beneficiaries rely on these benefits for more than half of their monthly family income (Messel and Trenkamp 2022). Although DI benefit amounts vary depending on an individual's circumstances, the average disabled-worker benefit in December 2021 (shortly after the survey) was $1,358.30 and nearly two-thirds (65.8 percent) of disabled-worker beneficiaries received between $800 and $1,800 a month (SSA 2022a, Table 5.D2).

When asked to estimate the average DI benefit, most respondents (57.9 percent) correctly reported a figure in the $800 to $1,800 range (Table 7). Another 33.9 percent estimated a figure lower than $800 per month, and only 8.1 percent estimated more than $1,800 per month. People with disabilities are more likely to correctly estimate the average DI benefit (63.8 percent), yet they too are far more likely to underestimate the monthly benefit (31.1 percent) than to overestimate it (5.1 percent). Women, younger adults, individuals without a high school diploma, and American Indian/Alaska Native, non-Hispanic Black, and Hispanic respondents are relatively more likely to underestimate DI benefits than are other groups. Overall, this evidence suggests that the public does not tend to overestimate the amount of monthly DI benefits.

SSI disability payments are typically lower than DI benefits, with a maximum federal benefit in 2022 of $841 per month for an individual and $1,261 for a married couple who are both eligible for SSI.¹⁰ UAS Survey 322 does not ask respondents to estimate the average SSI monthly payment.

Family Benefits

In addition to disabled-worker benefits, DI may pay auxiliary benefits to the disabled worker's spouse and children. Each spouse or child may receive up to 50 percent of the amount that the disabled worker receives, although the total amount of benefits that the disabled worker's family may receive cannot exceed 188 percent of the worker's benefit (Romig and Shoffner 2015). SSI does not offer auxiliary payments.

Nearly three in four respondents (72.4 percent) know that the DI program features auxiliary benefits (Table 8, Question 17). Younger adults, respondents without a high school diploma, and those who are Hispanic or Asian/Pacific Islander are less likely to be aware that DI provides auxiliary benefits.

Health Insurance

In addition to monthly payments, DI beneficiaries and SSI recipients receive access to health insurance through the Medicare and Medicaid programs, respectively. DI beneficiaries are generally eligible for the Medicare coverage 29 months after they become entitled for DI benefits.^11,12 SSI recipients in most states are eligible for Medicaid coverage beginning 1 month after they qualify for SSI payments.

When asked whether DI beneficiaries receive Medicare coverage immediately after monthly benefits start, only 44.1 percent of respondents correctly answered “false” (Table 8, Question 18), indicating low awareness of the 2-year waiting period. Knowledge of the waiting period did not vary by disability status or other individual characteristics. However, 87.1 percent of respondents correctly answered “true” that SSI recipients are also eligible for Medicaid (Question 19).¹³ People with a long-term work-limiting disability and older adults were more likely to be aware of Medicaid eligibility for SSI recipients.

Continuing Eligibility

DI and SSI eligibility may discontinue for various reasons. If evidence of work above the SGA level for a sustained period emerges, then a beneficiary or recipient of either program is determined to be no longer disabled. SSI eligibility also may cease if a recipient's assets surpass program thresholds. In addition to these financial factors, DI beneficiaries and SSI recipients must maintain medical eligibility by undergoing periodic continuing disability reviews (CDRs). CDRs generally occur every 3, 5, or 7 years, depending on the extent to which the individual's medical condition is expected to improve (SSA, n.d. a). If a CDR examiner determines that an individual has experienced medical improvement and can currently engage in SGA, the individual's benefits will cease.¹⁴

Most respondents (86.2 percent) understand that individuals will no longer receive DI benefits if their medical condition improves (Table 9). Awareness is highest for older respondents and those with higher levels of education. It is substantially lower among American Indian/Alaska Native respondents (56.2 percent).

Composite Program Knowledge

We find three significant differences across demographic groups in the composite program-knowledge measure (Table 10). First, people with disabilities tend to exhibit high levels of program knowledge (68.1 percent, versus 63.9 percent for the entire population). This makes sense, because people with disabilities are more likely to have applied for and participated in one or both of the programs. Second, composite program knowledge appears to increase with age: Respondents aged 50–61 scored 66.6 percent on the composite measure, compared with 56.6 percent for those aged 18–29. This result also makes sense, because the incidence of work-limiting disabilities and the filing of SSA disability program applications both increase for individuals approaching retirement age (SSA 2021). Finally, composite program knowledge varies by race and ethnicity. Respondents who are Asian/Pacific Islander (58.1 percent), American Indian/Alaska Native (58.5 percent), and Hispanic (60.4 percent) have lower scores on the composite measure than those who are non-Hispanic White (65.5 percent). Knowledge differences are statistically significant, even when accounting for age-distribution differences between these populations.

Conclusions

SSA disability programs protect people who are not able to work at SGA level because of a severe and long-term health condition. It is important for the public not only to be aware that these programs exist, but also to understand basic program aspects such as eligibility rules, the application and determination processes, and the monthly income that these programs provide. This knowledge is helpful for financial planning and, more specifically, when preparing to apply for benefits.

Descriptive findings from the UAS suggest that about three in four adults know that the DI program exists, but only half know that the SSI program exists. Knowledge about specific program aspects varies. For instance, majorities of respondents know that an individual must apply for disability benefits, that an applicant must meet the medical criteria for benefits, and that beneficiaries can become ineligible for benefits if their medical condition improves. However, knowledge about other program aspects is lower. For instance, there seems to be confusion about financial eligibility for DI benefits. Furthermore, about half of UAS respondents believe that the determination process is quicker than it is. By identifying the program aspects about which the public is less knowledgeable, SSA and other interested parties can better tailor communication and services for people with disabilities. In turn, potential applicants may be better prepared to decide whether to apply and know what to expect from the application process.

We also find that the composite measure of disability program knowledge is lower among people of color, even when controlling for age. People of color are also more likely to report that they are interested in learning about disability programs. Together, these findings suggest the promise of targeting these populations for informational outreach. Research also indicates that people of color are more likely to experience structural barriers in acquiring information about retirement planning, particularly from channels outside their social networks and employers (Chang 2005; Chard, Messel, and Rogofsky forthcoming). Future research can seek ways to identify and remove the structural barriers that account for the disparities in program knowledge.

Our analysis faces several limitations, some of which may also be addressed in future research. First, our descriptive analysis demonstrates only that public knowledge differs by program aspect and population subgroup; it cannot explain why these differences exist. Future surveys or other quantitative analyses could address, at least partially, the reasons for these differences. SSA might learn more about the barriers faced by populations with lower program knowledge by using in-person interviews with open-ended questions. Research could also include additional demographic characteristics, such as urban/rural residence, that would be useful for identifying other potential outreach target groups. Future versions of the disability program knowledge survey could also include additional questions about the SSI program, which are relatively lacking in UAS Survey 322. Moreover, future research could explore whether studies using address-based samples, such as the UAS, are able to reach a sample representative of the full population of people with disabilities. For instance, people with disabilities who do not have a stable address may not be included in the sampling frame. This may lead to underrepresentation of unhoused people with disabilities who may qualify for SSI payments based on their income and resource levels.

Furthermore, our findings do not control for demographic and socioeconomic factors affecting disability program knowledge in the general population. Future studies controlling for these factors (and accounting for interactions between the various factors) may shed more light on these relationships. As the sample size of disability program knowledge respondents grows, these types of analysis should become more feasible.

Appendix A: UAS 322 Survey Questionnaire

Listed below are the full-text versions of the UAS 322 survey questions, the responses to which are summarized in Tables 2–9. In some instances, the wording of the questions has been slightly modified for contextual clarity. Correct answers, or those indicating the respondent's knowledge or interest as highlighted in the tables, are noted.