PERSPECTIVES: Supplemental Security Income and Social Security Disability Insurance Beneficiaries with Intellectual Disability

Introduction

Intellectual disability (ID) is relatively uncommon; studies have estimated that less than 5 percent of the general population has ID (McKenzie and others 2016; Maulik and others 2011). Although the prevalence of ID is rare in the general population, people with ID make up a sizable share (about 14 percent) of the 13 million working-age Supplemental Security Income (SSI) and Social Security Disability Insurance (DI) beneficiaries.¹ ID is especially common among SSI recipients—more than one-fifth of them are eligible for payments because of ID.

ID is typically diagnosed during childhood. As a result, many beneficiaries with ID enter the SSI or DI programs at a young age and receive benefits for decades. Children with ID make up about 9 percent of children enrolled in SSI (SSA 2015b), and the large majority of them (about 80 percent) continue to qualify for SSI payments after age 18 (Hemmeter and Gilby 2009). Riley and Rupp (2015) estimated that beneficiaries with ID remain in the disability programs as working-age adults for an average of 29 years—about twice the average for all disability program beneficiaries. This long tenure contributes to much higher average DI, SSI, Medicare, and Medicaid cumulative expenditures than the estimated average for all beneficiaries ($472,913 versus $292,401, in 2012 dollars) (Riley and Rupp 2015).

Given their large number and long tenure on the disability rolls, beneficiaries with ID represent a potentially important target group for support services designed to enable community living, permit long-term employment, and reduce reliance on public benefits. Effective supports could also affect federal and state initiatives designed to promote employment opportunities for people with ID and developmental disabilities (DDs) in competitive, community-based employment, rather than in sheltered employment settings, where they earn low wages and remain segregated from mainstream society.

Information on the characteristics and employment experiences of people with ID is limited because identifying people with ID in national surveys can be difficult (Emerson, Felce, and Stancliffe 2013; Hendershot and others 2005). In addition, the relatively low prevalence of ID in the general population makes it difficult to study a large sample. Most of the information about people with ID comes from administrative sources (such as state education, vocational rehabilitation, and DD agencies) and from special surveys (such as those conducted for the National Longitudinal Transition Study and the National Core Indicators [NCI] project, which use administrative data to identify individuals with ID). Our study adds to the existing information by profiling working-age adults with ID who receive SSI and DI benefits. We use data from several rounds of a large, nationally representative survey of SSI and DI beneficiaries to describe the personal characteristics, employment, and income sources of beneficiaries with ID, and we compare them with those of disability program beneficiaries with other impairments. Our findings provide a better understanding of the working-age population with ID that relies on federal disability program benefits, the employment challenges they face, and the differences in their employment experiences from SSI and DI beneficiaries with other significant disabilities.

Background

The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) defines ID as a childhood-onset neurodevelopmental disorder characterized by deficits in intellectual and adaptive functioning (American Psychiatric Association 2013). A deficit in intellectual functioning is defined as being at least two standard deviations below the population average, which means having an Intelligence Quotient (IQ) test score of 70 or below. Significant limitations in adaptive functioning include limitations in communication, social skills, independence, and performance at school or work. Although many health conditions can cause significant intellectual and adaptive functioning limitations, the onset of ID during childhood or adolescence distinguishes it from otherwise similar neurocognitive disorders.

The DSM-5 further classifies levels of ID from mild to profound, based on a person's IQ and daily living skills (American Psychiatric Association 2013). About 85 percent of people with ID have conditions that are classified as mild, with IQ test scores of approximately 55–70 (National Academies of Sciences, Engineering, and Medicine 2015). Genetic and environmental factors such as low birth weight, Down syndrome, or a traumatic brain injury can contribute to ID, but in many cases, the cause is unknown.

Estimates of the prevalence of ID generally range from about 1 percent to 3 percent of the general population (Harris 2006; National Academies of Sciences, Engineering, and Medicine 2015). Recent meta-analyses placed ID prevalence at the lower end of that range, at about 1 percent, and found that ID is more common among males and in black and Hispanic populations (McKenzie and others 2016; Boyle and others 2011; Maulik and others 2011). Racial and ethnic differences in ID prevalence are likely due in part to the effects of poverty, which is strongly associated with a higher prevalence of ID (Boyle and others 2011; Durkin and others 1998; Camp and others 1998).

Because adults with ID often have significant intellectual and functional limitations that affect their ability to work, many qualify for SSI payments, DI benefits, or both. The SSI and DI programs use the same medical eligibility criteria for working-age adults. To be eligible, working-age individuals must demonstrate an inability to engage in substantial work because of a medically determinable impairment that is expected to last at least 12 months or result in death. The Social Security Administration (SSA) defines substantial work (referred to as substantial gainful activity, or SGA) as equivalent to earnings at or above an annually adjusted threshold—in 2016, $1,130 per month for nonblind beneficiaries and $1,820 per month for blind beneficiaries.² Claimants with ID must provide evidence of below-average intellectual functioning coupled with adaptive functioning deficits, meeting at least one of the following criteria:

• be unable to complete an IQ test independently;
• have an IQ score below 60;
• have an IQ score of 60 through 70 and another physical or mental impairment that limits the ability to work; or
• have an IQ score of 60 through 70 and some combination of restricted activities of daily living (ADLs), difficulty maintaining social function, difficulty maintaining concentration, and repeated episodes of decompensation (SSA 2016b).^3,4

The prevalence of ID differs markedly between SSI and DI beneficiaries. In the SSI program, about 19 percent of working-age individuals have a primary impairment of ID (SSA 2015b). This prevalence has declined slightly since the early 2000s, when it was about 22 percent (SSA 2003). In the DI program, about 8 percent of beneficiaries have a primary impairment of ID (SSA 2015a); in the early 2000s, it was closer to 10 percent (SSA 2001). The small recent declines in ID prevalence among disability beneficiaries likely reflect the aging of the baby boom generation; as this large group has aged, greater numbers of individuals have entered the SSI and DI programs with disabilities that are more prevalent in middle-aged and older individuals.

The difference in ID prevalence among SSI and DI beneficiaries is primarily due to differences in the non-medical eligibility criteria for the two programs. DI eligibility is generally contingent upon having a sufficient number of recent and lifetime quarters of Social Security–covered employment.⁵ However, disabled widow(er)s and disabled adult children (DACs) of Social Security beneficiaries can qualify for DI based on a spouse's or parent's work history. In 2014, disabled workers receiving benefits based on their own work histories represented 87 percent of DI beneficiaries, DACs represented about 10 percent, and disabled widow(er)s represented about 3 percent (SSA 2015a). The DI benefits are calculated based on past earnings, meaning that individuals with higher lifetime earnings are eligible for higher DI benefits. DAC and widow(er) benefits are subject to a maximum percentage of the worker's benefit (75 percent and 71.5 percent, respectively).

By contrast, SSI is a means-tested program that provides benefits to aged, blind, and disabled individuals who meet income and resource limits. For nonblind claimants younger than age 65, eligibility must be based on disability; therefore, they must also meet the medical eligibility requirements described above.⁶ The SSI payment amount is based on the individual's monthly income and living arrangement, with lower-income individuals receiving a higher payment than higher-income individuals receive, up to an annually adjusted maximum ($733 per month in 2016). An applicant's resources (such as savings, investments, vehicles, and property) must be very limited to qualify for SSI; the value of an individual's resources cannot exceed $2,000. Individuals may qualify for both SSI and DI if their incomes (including DI benefits) and resources are low enough to meet the SSI income eligibility criteria.

Because ID onset occurs during childhood, many individuals with this condition have not acquired the work history needed to qualify for DI, in part explaining the low ID prevalence among beneficiaries in that program. Most DI beneficiaries with ID qualify as DACs (56 percent) based on a parent's work history (SSA 2015a). Because those individuals often have low or no earnings, they are also likely to meet the income and resource requirements for SSI, contributing to the high prevalence of ID among recipients in that program.

Data and Methods

We used data from four rounds of the National Beneficiary Survey (NBS), fielded in 2004, 2005, 2006, and 2010. We pooled the data to obtain a large sample of beneficiaries with ID (3,905 of 16,190 NBS respondents; Table 1). The NBS was originally developed and implemented as part of an evaluation of SSA's Ticket to Work program. The survey collected cross-sectional data from a national sample of working-age SSI and DI beneficiaries. The samples for each round represent SSI and DI beneficiaries (including disabled workers, DACs, and disabled widow(er)s) who were receiving benefits as of June of the calendar year preceding the survey year. The survey's primary purpose is to provide information on the work-related activities of SSI and DI beneficiaries.⁷

NBS interviewers attempted to interview sample members directly. However, when sample members were unable to complete an interview, interviewers spoke with proxy respondents. This occurred only if sample members were not capable of providing informed consent,⁸ were not reachable because they were institutionalized or incarcerated, or could not be located. Interviewers asked proxy respondents only objective questions; they did not ask them for subjective information, such as satisfaction with services or with one's job. Proxy respondent rates were higher among people with ID (26–33 percent across the four NBS rounds) than they were among all NBS respondents (20–26 percent) (Thornton and others 2006; Stapleton and others 2008; Livermore and others 2009; Wright and others 2012).

We identified sample members with ID based on their primary or secondary impairment, as documented in SSA administrative data.^9,10 We grouped beneficiaries by program type at the time of sampling: DI only, concurrent (both SSI and DI), and SSI only. Table 2 shows the distribution of sample members with ID by the types of primary and secondary impairments recorded by SSA. Among beneficiaries with ID, nearly all (94.0 percent) had ID listed as their primary impairment. About a third (29.7 percent) of beneficiaries with ID had an additional non-ID primary or secondary impairment. Among these beneficiaries, psychiatric conditions were the most common additional impairment, documented for 17.8 percent of all beneficiaries with ID. All other impairments were relatively uncommon, with none accounting for more than 4.5 percent of beneficiaries with ID.

We report statistics for sample members aged 18–64 (working age) at the time of the NBS interview. We derived all statistics using the relevant survey weights, and all standard errors used to compute tests of statistical significance account appropriately for the complex NBS sampling design. Monetary values are expressed in 2010 dollars. We note all differences between beneficiaries with ID and beneficiaries with other impairments that are statistically significant at the 0.05 level.

Findings

In this section, we discuss the results obtained in the analysis pertaining to seven research questions.

Research Question 1: What Share of Beneficiaries Have ID?

In the period covered by the first four rounds of the NBS (2004–2010), individuals with ID comprised about 1.3 million of the total 9.7 million disability program beneficiaries, or 13.7 percent. Given a U.S. working-age population of about 180 million in 2010 (Census Bureau 2010) and an estimated populationwide ID prevalence of about 1 percent, those 1.3 million beneficiaries with ID may represent more than 70 percent of the roughly 1.8 million working-age people with ID overall. Thus, the Social Security disability programs provide support to a rather large share of this population.

As noted earlier, ID is much more common among SSI recipients than among DI beneficiaries. Among recipients of concurrent SSI and DI benefits, 23.1 percent have a primary or secondary impairment of ID (Table 3); the proportion is similar among SSI-only recipients (21.9 percent). Only 5.8 percent of DI-only beneficiaries have ID. We believe that the percentages shown in Table 3 reflect the prevalence of ID among beneficiaries more accurately than the previously cited SSA published statistics do. This is because our figures account for ID as either a primary or a secondary impairment (rather than a primary impairment only) and for recipients of concurrent benefits separately (rather than including them in the calculations for both SSI and DI beneficiaries).

Research Question 2: How Do Beneficiaries with ID Differ from Beneficiaries with Other Impairments?

In this section, we examine differences in program participation, demographic characteristics, and health characteristics between beneficiaries with ID and those with other impairments.

Disability program participation. About half of beneficiaries with ID (48.6 percent) received SSI payments only, 29.3 percent received concurrent benefits, and 22.1 percent received DI benefits only (Table 4). By contrast, the majority of other-impairment beneficiaries (57.2 percent) received DI benefits only, and 27.5 percent received SSI payments only.

As noted earlier, the comparatively large share of SSI recipients with ID partly reflects the early onset of ID; nearly three-quarters of beneficiaries with ID (72.4 percent of SSI-only recipients and 71.7 percent overall) reported experiencing disability onset during childhood (Table 5). Early disability onset can negatively affect labor force participation (Loprest and Maag 2007) and thus make it difficult to qualify for DI, which requires an earnings history. The majority of DI beneficiaries with ID are DACs who qualify for benefits based on a parent's earnings, rather than their own (not shown).¹¹ As discussed below, about one-third of recipients of DI-only and concurrent benefits with ID have never worked for pay, meaning they cannot qualify for DI based on their own earnings. Even among those who have worked, many may have had insufficient earnings to qualify for DI.

Because of their early disability onset, a rather large share of beneficiaries with ID had received SSI as children compared with beneficiaries with other impairments (47.2 percent versus 7.4 percent) (Table 4). The shares who had received SSI payments as children were much greater among recipients of concurrent (51.7 percent) and SSI-only (55.0 percent) benefits with ID relative to their DI-only counterparts (24.2 percent). The strong relationship between poverty and ID prevalence noted earlier likely contributed to the large percentages of recipients of concurrent and SSI-only benefits who received SSI payments as children.

Early disability onset also contributed to the length of time since beneficiaries with ID had received their most recent SSI or DI award. About two-thirds (65.8 percent) had received their most recent award more than 10 years ago, compared with 39.2 percent of beneficiaries with other impairments. Likewise, the mean length of time since the most recent award was markedly higher for beneficiaries with ID than for beneficiaries with other impairments (152 months versus 109 months). Among beneficiaries with ID, the length of time since benefit award varied little between recipients of SSI-only and DI-only benefits (157 months and 164 months, respectively) but was significantly shorter for recipients of concurrent benefits (133 months).

Demographic characteristics. Consistent with their early disability onset, beneficiaries with ID were about 12 years younger than were those with other impairments; their average ages were 39.0 and 50.9, respectively. Beneficiaries with ID were also more likely to be nonwhite than beneficiaries with other impairments were (35.6 percent versus 28.7 percent) but were equally likely to be of Hispanic or Latino ethnicity (about 10 percent). There were no differences in the sex distribution of the two groups. Beneficiaries with ID were less likely than those with other impairments to have a high school diploma or a General Educational Development (GED) certification (59.5 percent versus 34.0 percent had no degree). Furthermore, those with ID were less likely than were those with other impairments to have pursued postsecondary education (2.2 percent versus 28.4 percent). Although this difference might reflect an inability to pursue higher education because of ID,¹² it might also reflect the possibility that their education is ongoing because of their relatively young ages.

Beneficiaries with ID were less likely than beneficiaries with other impairments to live alone (17.3 percent versus 25.2 percent) and more likely to live in a group setting with nonrelatives (15.9 percent versus 5.9 percent). Similar shares of beneficiaries with and without ID reported living with family members, such as a spouse, partner, or other relatives. However, only 9.8 percent of beneficiaries with ID were married, compared with 34.7 percent of beneficiaries with other impairments. Given the low marriage rate of beneficiaries with ID, it is likely that many continued to live with their parents or other family into adulthood. Although less likely to be married, beneficiaries with and without ID were equally likely to have children younger than age 18 (about 20 percent). For beneficiaries with ID, the rate of parenthood was highest in the SSI-only group (24.0 percent) and lowest in the DI-only group (11.1 percent)—a pattern that is similar to, but not as marked as, that of beneficiaries with other impairments.

Health and functional status. For the NBS, beneficiaries reported the disabilities they believed most limiting to their daily activities. Of the limiting conditions reported by beneficiaries with ID, the most common was ID; however, only about one-third (31.0 percent) specifically said this condition was a limitation (Table 5). Consistent with this finding, Stapleton and others (2008) found that self-reported limitations in the NBS only somewhat concur with the primary and secondary impairments documented by SSA for program eligibility. The rate of concurrence for ID was markedly lower than the overall rate of concurrence for all types of impairments (46 percent versus 72 percent; not shown). We would expect differences between respondent-reported and SSA-defined impairments for several reasons. First, the former are the conditions that beneficiaries see as limiting their daily activities, whereas the latter are the most apparent or easily documented conditions that meet SSA's disability criteria. Also, respondent reports depend on the respondents' ability to describe their health conditions appropriately and on the interviewers' ability to interpret and code the responses accurately. Finally, there is a stigma associated with ID, which might lead respondents to underreport it.

Similar shares of beneficiaries with and without ID (30.0 percent and 32.7 percent, respectively) cited a psychiatric condition as a limitation (Table 5). However, beneficiaries with ID were less likely than beneficiaries with other impairments to report musculoskeletal conditions, diseases of the circulatory system, endocrine/nutrition disorders, diseases of the nervous system, and injury or poisoning. In fact, they were more likely to report that no condition limited their activities (11.6 percent) than were those without ID (4.7 percent). Among beneficiaries with ID, there were minimal significant differences in limiting conditions by program; only the rate of sensory conditions differed significantly.

Compared with beneficiaries with other impairments, those with ID reported being in better health. They were more likely to report their health as excellent or very good (26.2 percent versus 7.4 percent) and less likely to report any difficulties with ADLs. However, beneficiaries with ID had mixed experiences with instrumental ADLs.¹³ For example, they were more likely to report difficulties shopping for personal items and preparing meals than were beneficiaries with other impairments, but those with ID were less likely to have trouble getting around outside the home. In terms of functional limitations, beneficiaries with ID were more likely to report problems with mental and emotional tasks, including concentrating and getting along with others, but less likely to report problems with physical tasks, such as climbing stairs and lifting 10 pounds. This is consistent with their lower rates of reporting physical health conditions as reasons for limitation and their higher rates of reporting nonphysical conditions, including ID.

Research Questions 3 and 4: How Much Do Beneficiaries with ID Work? What Kinds of Jobs Do They Have?

In this section, we examine the employment experiences and use of support services of beneficiaries with ID and compare them with those of beneficiaries with other impairments.

Employment. Beneficiaries with ID were more likely to use employment services and reported more interest in working than did beneficiaries with other impairments (Table 6). Nearly one-quarter (23.3 percent) had used employment-related services at some point in their lives, compared with 14.0 percent of beneficiaries with other impairments. Beneficiaries with ID were also more likely to report having work goals or to see themselves working in the next 5 years (48.5 percent versus 40.2 percent). That result is largely due to a sharp difference among DI-only beneficiaries: A substantially larger share of those with ID had work goals and expectations (50.2 percent) than did those with other impairments (35.0 percent).

Beneficiaries with ID were more likely to be employed at the time of their NBS interview than were those with other impairments (18.5 percent versus 6.8 percent), and beneficiaries with ID were more likely to have worked during the previous calendar year (22.5 percent versus 10.5 percent).¹⁴ Employment was particularly high among DI-only beneficiaries with ID: 29.6 percent were employed at the time of their interview, and 31.7 percent worked during the previous year. This finding is consistent with administrative data, which also found relatively high employment rates among beneficiaries with ID even after controlling for other personal characteristics (such as age) that are predictive of beneficiary employment (Mann, Mamun, and Hemmeter 2015). The overall employment rate of beneficiaries with ID is somewhat lower than employment-rate estimates based on NCI data for 2014–2015. Those data indicate that 35 percent of individuals with ID/DD had paid jobs (Hiersteiner and others 2016). The employment-rate differences likely reflect differences in the NBS and NCI populations sampled. Given the medical and work-limitation criteria for SSI and DI eligibility, the NBS population was likely to have more severe disabilities, on average, than the broader population sampled in the NCI survey (adults receiving services from state DD agencies).¹⁵

Despite their greater desire to work and their higher employment rates, beneficiaries with ID were much less likely than beneficiaries with other impairments to have ever worked for pay (60.2 percent versus 89.9 percent). Beneficiaries who have never worked are likely to have sizable employment barriers, limited education, and limited skills, which may be related to the childhood onset of their disabilities.

Service use. Table 7 provides more detail on the reasons for using support services and on the types of services used in the previous calendar year by beneficiaries with and without ID. Beneficiaries cited the desire to improve their health as the most common reason to use services. However, those with ID were less likely than were beneficiaries with other impairments to report this reason (65.0 percent and 78.3 percent, respectively). Relative to beneficiaries with other impairments, those with ID were more likely to use services for purposes of improving independence (31.0 percent versus 24.6 percent) and finding a job (18.4 percent versus 7.9 percent). With or without ID, most beneficiaries who used services reported using personal counseling or group therapy (about 66 percent). However, those with ID who used services were more likely than were those with other impairments to use employment-related services and less likely to use medical services or services related to special equipment and devices. These differences between beneficiaries with and without ID in the types of services used (health versus employment) broadly reflect the differences in the reasons for service use noted above.

Job characteristics. The NBS collected information about the paid jobs held by sample members for at least 1 month at the time of their interviews. Beneficiaries with ID worked the same number of hours as beneficiaries with other impairments—about 20 hours per week (Table 8)—but they earned much less. On average, they made $5.54 an hour and $454 a month—about 40 percent and 48 percent less, respectively, than beneficiaries with other disabilities. Consistent with their lower earnings, beneficiaries with ID were much less likely than beneficiaries with other impairments to earn above SSA's monthly SGA level (9.4 percent and 29.3 percent, respectively).¹⁶ Working SSI-only recipients, regardless of disability, were much more likely to earn above the SGA level than working recipients of concurrent or DI-only benefits. Among employed SSI-only recipients, nearly one-quarter (22.0 percent) of those with ID and nearly one-half (45.1 percent) of those without ID earned above the SGA level. SSI recipients' higher earnings might be partly related to the difference in how earnings are treated in the SSI and DI programs. Under SSI, payments are reduced gradually as earnings increase. Under DI, benefits cease if the beneficiary earns over the SGA level in any month after the 9-month trial work period and 3-month grace period. Thus, DI provides a stronger incentive for beneficiaries to keep their earnings below the SGA level.

The low earnings among employed beneficiaries with ID might be partly due to their high rates of working in sheltered or supported employment, which typically offer lower compensation. Beneficiaries with ID were three times more likely than were beneficiaries with other impairments to work in such settings (69.1 percent versus 23.2 percent). Section 14c of the Fair Labor Standards Act permits employers to obtain certificates that, under certain conditions, allow them to pay workers with disabilities less than the federal minimum wage. The large majority of employers that use section 14c certificates are sheltered workshops (also referred to as center-based or facility-based employment) (General Accounting Office 2001). Unfortunately, the NBS data do not permit us to distinguish between sheltered, facility-based employment and supported employment in the community.¹⁷ However, looking at the shares of employed beneficiaries earning less than the federal minimum wage provides some indication of the extent to which employment might be in a sheltered work setting. Among employed beneficiaries with ID, 50.1 percent had hourly wages below the federal minimum wage, compared with 20.2 percent of employed beneficiaries with other impairments. Estimates based on the NCI data cited earlier indicate that in 2014–2015, about 20 percent of adults with ID/DD receiving services from state DD agencies worked in sheltered (facility-based) employment. Again, the differences in the NBS-based and NCI-based estimates likely reflect differences in the populations sampled and may also reflect changes in work settings over time—the NCI data suggest that employment in facility-based settings has declined since 2008 (NCI 2016b).

Perhaps owing to the prevalence of low-paying jobs, employment in sheltered work settings, and part-time jobs (among SSI-only recipients), working beneficiaries with ID were also less likely to be offered employer-sponsored health insurance than were working beneficiaries with other impairments (12.8 percent versus 24.8 percent).

Beneficiaries with ID also held different types of jobs than did beneficiaries with other disabilities. Those with ID were more likely to work in occupations involving manual labor (such as transportation and material moving; production; and building, grounds cleaning, or maintenance) and were less likely to hold service-oriented jobs (such as office and administrative support, personal care and services, and sales).

Research Question 5: What Employment Barriers Do Beneficiaries with ID Report?

As noted earlier, beneficiaries with ID were more likely to be working (or looking for work) than were beneficiaries with other impairments. Those who indicated having work goals or expectations, but who were not working at the time of their interview, gave reasons for not working (Table 9). About 75 percent of beneficiaries with ID cited a physical or mental health condition, compared with about 85 percent of those with other impairments. This may be because beneficiaries with ID reported better health than beneficiaries without ID. Beneficiaries with and without ID were about equally likely to report several of the employment barriers queried. However, those with ID were more likely to cite the inability to find a job they wanted or were qualified for, lack of transportation, employers' unwillingness to give them a chance, and waiting to finish school as their reasons. After poor health, the inability to find a job for which they were qualified was the most-cited barrier, reported by 48 percent of beneficiaries with ID.

Among beneficiaries with ID, barriers to working were generally cited more frequently by DI-only beneficiaries than by SSI-only recipients or concurrent beneficiaries; among beneficiaries with other impairments, that pattern was largely reversed. As noted earlier, it may be that many DI-only beneficiaries with ID are DACs, who receive benefits based on a parent's earnings history. Their own limited earnings might be a consequence of the barriers cited.

Research Questions 6 and 7: What Kinds of Unearned Income and Benefits Do Beneficiaries with ID Receive? How Does Their Economic Well-Being Compare with That of Beneficiaries with Other Impairments?

In this section, we examine four types of unearned income that beneficiaries with ID receive: SSA program benefits, benefits from non-SSA programs, other sources of income, and health insurance. Then, we compare their unearned income to that of beneficiaries with other impairments.

SSA program benefits. Most beneficiaries with ID reported receiving cash benefits from one or both of the disability programs administered by SSA (92.8 percent), although the share was slightly lower than that for beneficiaries with other impairments (95.1 percent; Table 10). This is likely because beneficiaries with ID have higher employment rates (as was seen in Table 8), meaning they are more likely to have earnings that might offset cash disability benefits.¹⁸ On average, beneficiaries with ID received $684 per month, much less than the average amount received by those with other disabilities ($938 per month; Table 10). Further, only 10.8 percent of those with ID received monthly benefits of $1,000 or more, compared with 39.5 percent of beneficiaries with other impairments. One reason for these differences is that beneficiaries with ID rely more on SSI than on DI. Another reason may be that DI benefit amounts are tied to lifetime earnings, which tend to be lower for beneficiaries with ID. Indeed, the gap between the average monthly benefits of beneficiaries with and without ID is largest among those receiving DI-only benefits ($843 and $1,131, respectively).

Benefits from non-SSA programs. Beneficiaries with ID also received less public income support from non-SSA sources. Most (67.8 percent) received no benefits from non-SSA programs. On average, those with ID received about $81 in non-SSA program benefits per month—less than half of the average amount received by beneficiaries with other impairments (about $216 per month). However, those with ID were more likely than were beneficiaries with other impairments to receive means-tested support, such as food assistance from the Supplemental Nutrition Assistance Program (31.4 percent and 25.8 percent, respectively) and public cash assistance or welfare (4.9 percent and 3.4 percent, respectively). The greater use of means-tested programs among beneficiaries with ID reflects their greater likelihood of both receiving SSI payments (described earlier) and living in households with income below the federal poverty level (further discussed below).

Other sources of income. Beneficiaries with ID were significantly less likely than beneficiaries with other impairments to receive income from pensions or retirement savings, private disability insurance, workers' compensation, or veterans' benefits; less than 1 percent received income from each of these sources. As these income sources are generally tied to past employment, this finding is not surprising given the large share of beneficiaries with ID who had never worked for pay.

Health insurance. Regardless of impairment, nearly all beneficiaries were insured through Medicare or Medicaid, although the share was slightly higher for beneficiaries with ID than for those with other impairments (93.3 percent versus 90.0 percent). Almost 10 percent of those with ID were insured through a private source, such as an employer or family member. This rate was significantly lower than that for beneficiaries with other impairments (23.1 percent), which may in part reflect the markedly lower marriage rates among beneficiaries with ID (Table 4) and thus the lack of access to health insurance through a spouse's employment. One exception to the overall trend in private insurance coverage was the rate among SSI-only recipients: those with ID were more likely than those with other impairments to have private health insurance (9.1 percent versus 5.5 percent) (Table 10). This may be because many SSI-only recipients with ID were covered under a parent's plan.¹⁹

Poverty. Overall, beneficiaries with ID were more likely than were those with other impairments to live in households with income below the federal poverty level (64.7 percent and 45.9 percent, respectively). This higher poverty rate is driven by the poverty rates among DI-only beneficiaries; those with ID were about twice as likely to live in poor households as were their counterparts without ID (51.1 percent and 26.7 percent, respectively). This disparity is consistent with the lower average amounts of SSA and non-SSA program income among DI-only beneficiaries with ID noted earlier. The poverty rates among recipients of concurrent and SSI-only benefits differed less markedly between those with and without ID.

Summary and Implications of the Findings

People with ID represent an important group of disability program beneficiaries, especially in the SSI program, where they make up more than one-fifth of recipients. These individuals receive benefits for extended periods, resulting in high DI, SSI, Medicare, and Medicaid program expenditures during their working-age years.

Beneficiaries with ID differ from those with other disabilities in many respects. For example, they reported better health and fewer activity limitations in the NBS, and they were more likely to be employed or interested in employment. Most of those who worked did so part time and for low wages; their average monthly earnings were about half the earnings of beneficiaries with other impairments, and the percentage of beneficiaries with ID earning above the SGA level was less than one-third of that for beneficiaries with other impairments. Relative to the latter, beneficiaries with ID received less income from public and private sources of assistance and were at greater risk of poverty.

Although many beneficiaries with ID were employed at the time of their NBS interview, the findings suggest that they faced numerous obstacles to substantial employment and independence. The majority of the beneficiaries with ID in our study had never worked for pay. Disability onset during childhood, along with significant cognitive limitations, may have restricted their opportunities for paid employment and for completing a high school or equivalent education. Most of those who worked were employed in sheltered or supported work settings. One-half of the beneficiaries with ID earned below the federal minimum wage, suggesting that many were in jobs with limited earnings potentials or opportunities to advance.

Despite the hurdles faced by people with ID, early intervention, education, and employment supports may help many of them to lead more productive and fulfilling lives in their communities. Studies have shown that high parental expectations and early work experience in community-based employment are associated with a greater likelihood of employment success among transition-age youths with disabilities (Carter, Austin, and Trainor 2012; Siperstein, Heyman, and Stokes 2014). There is also evidence that supported-employment approaches lead to better employment outcomes, but the evidence of their cost effectiveness is mixed (Nord and others 2013). The programs and policies that promote skill development and competitive employment in the community could help to reduce poverty and dependence on public programs among these beneficiaries. These approaches would need to address the low levels of education, lack of work experience, and numerous other job-related challenges reported by beneficiaries with ID, including issues related to job qualifications, accommodations, negative perceptions of beneficiaries' ability to work, and co-occurring psychiatric and physical health conditions.

In its 1999 Olmstead v. L.C. decision, the Supreme Court confirmed the Americans with Disabilities Act mandate that people with ID and other significant disabilities receive services in the most integrated setting appropriate to their needs. Although it was initially applied to the provision of health care, Olmstead has influenced the provision of a wide array of services that promote the community integration of people with significant disabilities, including employment services (Musumeci and Claypool 2014). Recently, government agencies have implemented initiatives to promote more integrated employment opportunities for people with disabilities in lieu of sheltered workshop settings. Some of these include the following:

• Department of Justice actions in two states to phase out sheltered workshops for people with DD (Department of Justice n.d.);
• the Department of Labor's (DOL) Employment First initiative, which provides resources and technical assistance to states to promote greater opportunities for integrated employment for people with disabilities (DOL n.d. b); and
• Workforce Innovation and Opportunity Act provisions that place limits on the use of section 14c special minimum wage certificates and add new requirements for employers that use them.²⁰

A variety of other federal and state agencies have initiated efforts to find new and better ways to provide employment services and supports to people with disabilities and to provide strong evidence of their effectiveness. Many have a special focus on youths with significant disabilities, among whom ID is a leading cause of disability. Examples include the following:

• DOL's Disability Employment Initiative, which provides grants to states to improve the way they deliver services to people with disabilities, including youths and young adults (DOL n.d. a);
• the Department of Education's Transition Work-Based Learning Model Demonstrations, which provides Disability Innovation Fund grants to support state vocational rehabilitation agencies in developing and testing new ways to help transition-age youths with disabilities become employed (Department of Education 2016); and
• the Promoting Readiness of Minors in SSI demonstration, administered jointly by the Department of Education and SSA, which is testing whether the early and more coordinated provision of employment-related services to youths who receive SSI, and their families, will improve their posteducational outcomes (Department of Education 2013).

The persistence of low earnings, employment in segregated settings, high poverty rates, and potentially high lifetime public expenditures for SSI and DI beneficiaries with ID suggest a need for new service-delivery approaches. It is hoped that these and other rigorous efforts to test innovative approaches will yield strong and convincing evidence that will spark systematic changes that significantly improve the lives of people with ID and other disabilities.