Center for American Progress

How Dehumanizing Administrative Burdens Harm Disabled People
Report

How Dehumanizing Administrative Burdens Harm Disabled People

Unnecessary barriers make accessing basic supports extremely difficult for disabled people across the country.

In this article
Min Jung waits for a trolley to go to her physical therapy appointment.
A woman who suffers from degenerative joint disease, fibromyalgia, and chronic fatigue syndrome—and receives disability benefits—waits for a trolley to go to her physical therapy appointment in Philadelphia on November 13, 2017. (Getty/The Washington Post/Eileen Blass)

This report contains a correction.

Authors’ note: The disability community is rapidly evolving to using identity-first language in place of person-first language. This is because it views disability as being a core component of identity, much like race and gender. Some members of the community, such as people with intellectual and developmental disabilities, prefer person-first language. In this report, the terms are used interchangeably.

Introduction and summary

“All of the systems are set up to really dehumanize disabled people and not to help us.”

– Debra Guckenheimer, SSDI recipient from California1

For disabled people in America, barriers to critical, lifesaving safety net programs are too often a part of everyday life. These barriers, known as “administrative burdens,” are roughly defined as any challenge that makes it difficult for someone to access or maintain assistance for which they otherwise qualify.2 Administrative burdens cause real, lasting harm to huge swaths of disabled Americans, making it difficult for them to navigate a system that is supposed to help them cover basic necessities such as food, housing, and medical treatments.

Administrative burdens come in many forms, including lengthy and complicated paperwork, asset tests, inflexible in-person appointments, backlogs with long wait times, inaccessible and poorly designed websites, and complex and confusing application processes. While they can affect anyone in the United States, they tend to most significantly impact the most marginalized and vulnerable members of society.3 For example, programs targeted to low-income people typically present far more hurdles for applicants to overcome in order to gain access than do programs targeted to middle- and upper-class people. Likewise, disabled people, people of color, LGBTQ people, women, and the elderly are, for a number of reasons, hit harder by administrative burdens. Whatever the reason, this often results in these people’s exclusion from benefits that they desperately need and that, in some cases, could be lifesaving.4 Moreover, because administrative burdens tend to have the largest impact on people with worse medical conditions and lower prior earnings as well as lower education levels, they exacerbate and entrench inequality.5

U.S. society is highly ableist, and the country has a fragmented, costly, and inequitable health care system.6 The combination of these factors results in disabled people being more than twice as likely as nondisabled people to live below the poverty line.7 Programs meant to address these disparities require disabled people to constantly prove they are disabled enough to receive benefits,8 and some politicians have sought to undermine these programs and reduce government spending on low-income households by creating convoluted evaluation and reporting requirements that weed out many individuals who should be eligible.9 The system is so complicated that a whole legal industry exists to help disabled people apply for programs and appeal disability insurance decisions.10

The fact that I needed a lawyer, it took me a long time to wrap my head around. Because what other federal benefits do people receive that you need to hire a lawyer for? I thought, ‘This doesn't make any sense.’ Debra Guckenheimer, SSDI recipient from California

For this report, the authors interviewed several people with disabilities who have direct experience navigating programs such as Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).11 These interviewees have given permission for their stories of administrative burdens to be shared and quoted. Their recounting of the trials they went through to access vital assistance illustrates how the United States’ safety net system is antiquated and demeaning, especially for people with disabilities.

The safety net is a vital part of the American economy. Not only does it help low-income households afford basic necessities, but it also increases economic mobility and promotes economic growth.12 Individuals and families who receive assistance through safety net programs see improved immediate and long-term health, educational, and career outcomes.13 Unfortunately, administrative burdens prevent a lot of qualified people from accessing the safety net benefits they need, which both harms those individuals in the short term and makes it much harder for them to escape poverty in the long term. This, in turn, harms their communities and the entire economy.14

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I worked my entire life and took honors classes in high school. I then went on to university and hurt my back. If I could work again, I would. It’s not my fault, and there is nothing else I can do; Social Security, if it was enough to live on, is my only choice for survival right now. Nick, SSDI, SSI, and SNAP recipient from Missouri

No single solution will fix all administrative burdens. Individual burdens may require unique steps to correct. That being said, this report details some of most urgent and widespread administrative burdens affecting the disability community and offers broad solutions to improve experiences within and the efficiency of the system as well as overall participation in these lifesaving programs.

Recommendations for all assistance programs:

  • Improve data sharing and automation when determining eligibility.
  • Increase response periods and flexibility in scheduling in-person interviews.
  • Expand language offerings and accessibility in application and benefits forms.
  • Adopt a “no wrong door” policy that creates a universal federal application process.
  • Increase accessible infrastructure, specifically for transportation and housing.
  • Abolish work requirements, reduce paperwork and in-person interviews, and increase funding for agencies administering programs to improve staffing levels and efficiency.

Recommendations for SSDI:

  • Eliminate the five- and 24-month waiting periods before full benefits kick in.
  • Trust the diagnoses and assessments of applicants’ doctors.
  • Allow disabled applicants to skip the “reconsideration” stage of the application process.
  • Hire more administrative law judges to reduce wait times and the number of backlogged cases.
  • Allow former disability recipients to continue receiving Medicare coverage even if they are denied for expedited reinstatement.
  • Eliminate the trial work period, the extended period of eligibility, and the substantial gainful activity benefit cliff.

Recommendations for SSI:

  • Eliminate, or at least raise, asset tests.
  • Make SSI an individual-centered program.
  • Eliminate in-kind benefits tests.
  • Auto-enroll SSI beneficiaries in Medicaid in all 50 states.
  • Update the income disregard thresholds.

Ultimately, policymakers need to engage in a cultural shift to move burdens off participants and onto governments,15 with an emphasis on improving user experience and increasing participation among those eligible when designing and revising service delivery models—rather than trying to disqualify and discourage as many people as possible. Reducing administrative burdens will create a more efficient safety net system, improve trust in government, boost the economy by increasing spending power and productive time for low-income households, and, most importantly, help people with disabilities and their families survive and thrive within their communities.16

How To Address the Administrative Burdens of Accessing the Safety Net

This report focuses on the plethora of barriers that administrative burdens place on people with disabilities, especially in regard to accessing the safety net. For a detailed breakdown of administrative burdens more broadly and how they are placed heaviest on low-income people, read this previous report from the Center for American Progress:

Administrative burdens impose serious harms on disabled people

“It’s a giant systemic problem where people aren’t getting the information they need [to apply]. Or they don’t know where to find that information.”

– Adrian, SSI recipient from California17

Just as it is expensive to be poor,18 it is expensive to be disabled.19 Households with disabled adults need 28 percent more income, on average, to achieve the same standard of living as adults without a disability.20 Moreover, the added costs of medicines and medical procedures, accessibility accommodations in homes and transportation, and many other regular expenses are exacerbated by the fact that disabled workers—if they are able to work and are employed—earn just 74 cents for every dollar earned by their nondisabled counterparts; Black and Hispanic disabled workers, in particular, earn 60 and 61 cents, respectively, for every dollar earned by nondisabled, full-time white workers.21 The extra cost of living for disabled people is often referred to as the “disability tax.”22

Administrative burdens within programs intended to help people with disabilities add another dimension to the disability tax, often financially but also through additional drains on disabled people’s time, energy, and physical and mental well-being. Broadly speaking, experts have identified three categories of costs that administrative burdens impose:23

  1. Learning costs derive from the complexity of these systems and a lack of public education and awareness about a program’s existence, eligibility, benefits, and rules as well as how best to navigate the entire process.
  2. Psychological costs are the health impacts of the stress, stigma, and lack of autonomy that come with navigating these programs’ administrative processes.
  3. Compliance costs are all the time, energy, and money spent completing administrative requirements. These have also been referred to as the “time tax.”24

The disability community often uses a metaphor called the “spoon theory,” coined by writer Christine Miserandino, to describe how people with chronic illness have limited energy to spend on daily tasks.25 This energy—symbolized by spoons—can vary on a given day depending on the individual’s medical condition and other variables. According to this metaphor, each activity uses up a spoon, forcing individuals to make difficult decisions about what activities, no matter how small, they can do.26 Specifically, administrative burdens often sap what little energy disabled people have, which can make it challenging for them to complete the rest of their daily responsibilities.

Debra Guckenheimer, an SSDI recipient from California, articulated this dilemma:

I would get notices about SSDI that I had to appear somewhere, and it would just make me cry because if I have to take one of my spoons to spend it on this, then I can’t be with my kids; I can’t try and get better; I can’t try and get outside. And it’s hard enough dealing with the lack of access in the world and ableism and being in a lot of pain and all these things. Then, to have to ask someone for help and have them actively trying to harm you—to see if they can break you from asking for help.

On top of negatively affecting applicants and participants, administrative burdens are detrimental to program administrators. Burdens pull administrators away from providing people with helpful and personalized assistance and instead leave them to comb through voluminous amounts of paperwork and to adjudicate minute filing deficiencies.27 Government workers should have rewarding jobs providing aid to those who need it most, but they are often left overwhelmed, which, sadly, can translate into negative experiences for people seeking assistance.

Dealing with all the administrative burdens in safety net programs comes with so many costs—especially for people with disabilities—that it is hard to capture them all. Interviewees for this report described years spent with little to no income working through the SSI or SSDI system only to see their applications rejected. They were then left to work through similarly long and strenuous appeals processes. As one interviewee, an SSDI recipient who asked to remain anonymous, put it, “Almost everyone, from what I hear, is rejected on the first time that they apply. It’s almost as if they just wanted to see if you’re really serious about it.”28

From 2014 to 2016, only 33.5 percent of applicants for SSDI and 32.6 percent of applicants for disability benefits with SSI were awarded benefits at any point in the process.29 For disabled people who see those long odds but have no other choice but to apply and appeal, a mountain of exhausting and often dehumanizing barriers await. Their lives are taken over by paperwork that is incredibly extensive, highly confusing, and misleading. As Matthew Cortland, a lawyer and previous SSI recipient states on their website: “You shouldn’t have to be a lawyer to keep Medicaid coverage, understand Medicare drug plans, get your insurance company to cover your prescriptions, qualify for SSI/SSDI, or get reasonable accommodations at work or school.”30

Many of the forms require significant portions to be completed by doctors, and many doctors do not want to spend hours on paperwork: They often charge hundreds of dollars for the service, or just refuse to do it at all, forcing applicants to find new medical providers.31 And even when people are able to complete these applications, pass their medical evaluations, and meet all the other requirements, wait times can be prohibitively long. Worse yet, these wait times have only increased in the wake of Social Security Administration (SSA) staffing shortages and increasing backlogs of applications.32

Disabled people experience these and numerous other administrative burdens every time they apply for a basic support, making the challenges for which they already need help considerably harder. Asset tests require program participants to keep their resources below a specific threshold, trapping them in poverty and creating scenarios in which a small windfall or documentation mistake can cause them to lose benefits for months.33 In many cases, these participants do not have any other money to fall back on. Moreover, governments’ use of paper mail means that participants, or the government, are likely to miss or even lose important information.34 Critical in-person appointments and hearings, meanwhile, are often scheduled with little to no flexibility, leaving participants and their families scrambling to get time off work and find accommodations, such as accessible transportation and child care.

Interviewees described denials that were frequently the result of misunderstandings or clerical errors. They recounted being required to visit government doctors with no expertise in their specific condition and little knowledge of their medical history; after just a brief exam, interviewees said, these unfamiliar doctors made medical determinations about their ability to work. For instance, interviewees recalled judges with no medical training making assessments about the severity of their disability and its likelihood of improving. Many also described a feeling that the system at large saw them as “frauds” or “leeches” on the system until they extensively proved otherwise.

‘They’re treating you as if you’re trying to rip them off’

Many interviewees for this report expressed feeling distrusted and dehumanized when applying for SSDI or SSI benefits. Below is just a small selection of their thoughts:

“In the Social Security office, it feels like they’re treating you as if you’re trying to rip them off. Like, the default is they don’t trust you.”

– Anonymous SSDI and Medicare recipient from California35

“You start adding all these shames on top of it, and then, society makes you feel like you’re leeching off of the system.”

– Marcos Castillo, SSDI and SSI recipient from Arizona36

“I felt from the beginning, and just continue to feel from Social Security, the constant presumption that I’m committing fraud, in spite of my doctors making strong written statements that I am unable to work.”

– Anonymous SSDI recipient from California37

“The first time I applied, the exam that I was sent to, the doctor did do a very thorough physical exam. And as he was doing it, he was explaining to me … how he found it appalling that someone as young as I would apply for disability and that he didn’t believe that I should get it at my age. And he was asking for my range of motion, so he’s having me do certain movements, and then, as I would go to where, you know, my ending point, he would push my body way past where it could go, and he really injured me and then denied [me]. … The exams really serve no valuable purpose unless somebody doesn’t have access to medical care.”

– Debra Guckenheimer

“The doctor, he came off to me as very unqualified from the very beginning. I have been examined by first-rate neurologists who are very well-versed in epilepsy. I’ve been examined by first-rate epileptologists. I understand my situation. I understand my condition very well. And for this guy, to me, he just felt like an absolute clown. I just felt, like, ‘OK, this guy, he’s just cherry-picking whatever information he can get his hands on [to reject me].’”

– Adrian, SSI recipient from California38

Disabled people encounter administrative burdens in almost every aspect of their lives

Disabled people face significant administrative burdens in a wide variety of government assistance programs and in systems crucial to their daily lives. The two most prominent of these government programs are SSDI and SSI; but people with disabilities also face significant barriers accessing other systems designed to help them meet many basic needs, such as housing, food, education, transportation, and work.

The subsections below profile the administrative burdens in several programs:

Social Security Disability Insurance

“I have to ask, ‘Is it really cost-effective in the SSDI and SSI system to spend so much effort and people hours trying to see if people are committing fraud?’”

– Anonymous SSDI recipient from California39

SSDI is the largest safety net program for Americans with disabilities. While Social Security retirement benefits support older Americans who are no longer in the workforce, SSDI helps those who have become too disabled to work as well as their dependents. All total, SSDI provides benefits to 7.7 million disabled former workers, almost 1.2 million children of disabled workers, and 93,000 spouses of disabled workers.40 As of August 2022, the average monthly benefit was $1,362 for disabled former workers, $429 for children of disabled workers, and $377 for spouses of disabled workers.41

Because Social Security disability payments, like Social Security retirement payments, are calculated as a share of workers’ former earnings,42 benefit levels differ significantly among recipients. Approximately 58 percent of beneficiaries who are disabled former workers receive less than the average $1,362 monthly benefit, and 29 percent receive less than $1,000.43 Likewise, some SSDI recipients qualify for supplemental payments through SSI but only if they have extremely low assets and few other supports.

SSDI: By the numbers

7.7M

Number of disabled former workers who receive SSDI benefits

1.2M

Number of children of disabled workers who receive SSDI benefits

93K

Number of spouses of disabled workers who receive SSDI benefits

SSDI is a crucial lifeline for most recipients. To qualify for the program, their medical symptoms and diagnoses must be expected to last at least a year or result in death.44 Those who qualify are likely to be in very poor health: Approximately 1 in 5 male and 1 in 6 female SSDI recipients die within their first five years on the program, and roughly 2.8 percent die every year.45 With such severely disabling conditions, SSDI recipients are often extremely dependent on their monthly benefits: SSDI is the only source of income for nearly 2 in every 5 beneficiaries.46 Overall, SSDI reduces the poverty rate among disabled worker beneficiaries from 49.1 percent to 18.5 percent.47 SSDI’s cash benefits have also been shown to save lives, with the lowest-income beneficiaries experiencing the largest reductions in mortality.48

In addition to providing cash aid, SSDI makes all beneficiaries eligible for Medicare.49 However, SSDI recipients are ineligible for cash benefits during the first five months after the onset of their disabilities and then must wait another 24 months before they are eligible for Medicare.50 Strikingly, a 2004 study found that more than 1 in 9 SSDI beneficiaries pass away during the 24-month waiting period.51

An anonymous SSDI recipient from California detailed the long, confusing, and laborious application process:

Four months after I applied, I was sent to the Social Security-chosen doctor for the consultative exam. Six months after I applied, I got my first denial. I appealed. My second denial came 10 months on from my date of application, and we requested a hearing a year and five months in. We received a hearing date, which was a year and eight months in; had the hearing, which was absolutely miserable; and then, a year and nine months in—luckily, less than a month after the hearing, which I think is a lot faster than some folks—I was notified that the judge had approved me. Then, it took six months between hearing that the judge had approved me and receiving backpay.52

During the process, applicants can be approved for benefits at any of five different stages, with those who are rejected at one stage becoming eligible for approval at the next. Nonetheless, just 1 in 3 applicants are ultimately awarded benefits. (see Figure 1)

Figure 1

The five stages present numerous burdens for applicants to overcome:

  1. Individuals submit their applications to Social Security Administration field offices, which forward the applications to their state’s Disability Determination Services (DDS) office. Approximately 22.9 percent of applicants are awarded benefits at this stage, while 41.6 percent are rejected for medical reasons.53 The other 35.4 percent are issued “technical denials,” a catch-all term for applications rejected for nonmedical reasons.54 The most common causes of technical denial are insufficient work history, insufficient recent work history,55 evidence of earnings above the substantial gainful activity threshold, and the Social Security Administration not being able to contact the applicant.56 During this stage, DDS can also require a consultative exam from a doctor of its choosing.57
  2. Those applicants denied for medical reasons can request that DDS reconsider their claims. At this point, DDS reexamines applicants’ medical evidence without reevaluating their technical qualifications. Fewer than 1 in 10 reconsiderations are ultimately approved.58
  3. Applicants denied in the second stage can request disability hearings before an administrative law judge (ALJ). ALJs hear arguments both for and against the applicant before issuing a ruling, and approvals are more common at this stage than during the first two.59
  4. Few applicants pursue their claims beyond the third stage. However, if applicants believe that the ALJ made an error, they can submit written testimony to the SSDI Appeals Council. The Appeals Council can award benefits, send the case back to the ALJ for further review, or deny the review request.60
  5. Applicants denied in the fourth stage can appeal their cases in federal district court.61
It definitely took less time this time. My case went fast. This time around, it took two years. Last time, it was about three years. Debra Guckenheimer, SSDI recipient from California

This messy, bureaucratic process creates at least three heavy administrative burdens for applicants. First, the application process is incredibly lengthy.62 In fiscal year 2021, the average processing time was 5.4 months for the first stage of the application process, 4.8 months for the reconsideration stage, and 10.7 months at the ALJ hearing stage, with gaps between each stage. (see Figure 2) Those who petition the Appeals Council can expect an additional delay of six to 12 months as the council makes a ruling. On average, 8,000 applicants declare bankruptcy each year, and 11,000 die, while awaiting decisions between the second and fifth stages of the application process.63

Figure 2

Moreover, applicants are expected to gather and fill out an excessive amount of paperwork to document their disabilities. They must provide physician statements, medical test results, a medical history, and documentation of their treatments, emergency room visits, and diagnoses.64 Moreover, all this evidence must go back multiple years.65 The amount of paperwork differs significantly by type of disability but can become quite staggering in certain cases.66 In about 5 percent of disability applications, total medical documentation exceeds 1,000 pages.67

‘They wanted an entire history going back decades’

Many interviewees spoke about the difficulties of obtaining their full medical histories as part of SSDI determinations. Some of their experiences are highlighted below:

“The fact that I needed to have some outside examinator was kind of absurd, right? Like, I have a lot of medical providers. They told me I had over 1,000 pages of medical records. So, they sent me for the physical. They sent me half an hour away for a doctor who spoke to me for five minutes, didn’t touch me, and then said I could go and then advised the Social Security office that they did not agree that I was disabled.”

– Debra Guckenheimer, SSDI recipient from California

“The first real scary part was when the Social Security Administration said we needed records from the 1970s. And here it was 20 years after diagnosis because I was diagnosed by a pediatric neurologist in the late ‘70s. And I was wondering, ‘How in the world am I going to get those records?’ … They wanted an entire history going back decades.”

– Adrian, SSI recipient from California

“I have [medical] records going back 20 years. It was really hard to get a lot of them because some [medical offices] destroyed them after seven years. That’s a pretty standard practice.”

– Anonymous SSDI and Medicare recipient from California68

The complicated nature of the application process forces many applicants to hire disability lawyers. Notably, disability lawyers who successfully litigate their client’s case are granted up to 25 percent of their client’s back benefits, up to a cap of $6,000.69

An anonymous SSDI recipient from California spoke about the implications of this:

I have one friend who is absolutely eligible for SSDI, but she’s not willing to apply. She’s not willing to even get into it because she sees how totally humiliating and frightening and dehumanizing this process has been and, kind of, continues to be for me. So, she just says, ‘I’ll scrape along somehow.’ So, she’s homeless, but she will not apply for SSDI because she doesn’t want to go through what I’ve gone through.70

Working while receiving SSDI

I know several people whose parents don’t let them work because they know they’ll lose all the benefits.”

– Nicole LeBlanc, SSDI recipient71

SSDI recipients are allowed to supplement their benefits with earnings. In 2022, they could earn up to $1,350 per month, but if they earned even a penny more, their benefits would be eliminated. This $1,350 limit is referred to as the substantial gainful activity (SGA) threshold, rising in line with average wage growth every year.72 Notably, SSDI beneficiaries can deduct the cost of any disability-related work expenses from their gross earnings and can sometimes average their earnings over multiple months.73

The SGA threshold makes it hard for SSDI recipients to pull themselves out of poverty. Individuals receiving $1,000 in monthly benefits would lose that entire benefit if their monthly wages went from $1,350 to $1,351—meaning their total income would be reduced by $999. Recipients can temporarily cross the SGA threshold under certain conditions, but these conditions are complex and program participants may not readily understand them.74

To counteract this potential poverty trap, SSDI allows beneficiaries to earn modest wages through various work incentive programs. However, these programs are poorly structured and highly convoluted. Before returning to work, increasing their work hours, or accepting a raise, SSDI recipients must navigate a vast maze of highly legalistic rules and regulations.

These programs do not allow for gig economy, unstable income, if you're somebody who can't seem to get anybody to hire you for a livable wage full time. Nicole LeBlanc, SSDI recipient

SSDI recipients are allowed to exceed the SGA threshold during their nine-month trial work period (TWP), which, in 2022, was any month—up to nine total—where earnings were above $970.75 The nine months need not be continuous, and they reset every 60 months.76 However, the month after an SSDI beneficiary uses their ninth month, they automatically enter a continuous 36-month extended period of eligibility (EPE), during which, in 2022, they were denied benefits for individual months they earned above the SGA threshold of $1,350.77 There is, however, a three-month grace period in the EPE, during which an SSDI recipient will not experience a benefit cut in their first month or the subsequent two months they have earnings above the SGA threshold.78 After the end of the EPE, if recipients’ earnings still surpass the threshold, they are kicked off the program entirely.79

Once beneficiaries are expelled from the program, they become eligible for a five-year period of expedited reinstatement.80 During this time, workers can be reapproved for SSDI without having to go through the full application process again as long as they stay below the SGA threshold.81 If reapproved, workers can receive SSDI benefits for 24 months without being subject to the five-month waiting period for cash benefits or the 24-month waiting period for Medicare coverage.82 After the end of this period, benefits and work incentives normalize, and the recipient is made eligible for a new TWP, a new EPE, and another potential period of expedited reinstatement.83 Beyond the five-year window, former beneficiaries are no longer eligible for expedited reinstatement and must submit a new application, which, if approved, is followed by the full waiting periods for cash benefits and Medicare coverage.84

A host of similarly complicated provisions govern the intersection of work and Medicare coverage. All SSDI recipients are eligible for at least 93 months of free Medicare Part A coverage after their last month of the TWP,85 but the expiration date for their coverage depends on the specific timing of when their earnings cross the SGA threshold:

  • If recipients exceed the SGA threshold at least once during the first 13 months of their EPE, and again at some point between months 16 and 36, they receive free Medicare Part A coverage for 77 months following the first month within months 16 to 36 that they had above-SGA earnings.86
  • If recipients earn below the SGA threshold during the first 13 months of their EPE, then exceed the SGA threshold at some point between months 14 and 36, they keep Medicare Part A coverage for 80 months after the first month they had above-SGA earnings.87

If recipients’ disabling conditions persist after their free coverage expires, they may purchase Medicare Part A for up to $499 per month, as of 2022, and continue purchasing Part B coverage for $170.10 per month.88 And if a former SSDI recipient applies for reinstatement but is denied on medical grounds, their Medicare coverage ceases, regardless of whether they have used their 93 or more months of extended coverage.89 Therefore, in some cases it makes sense for an applicant to go through the full application process a second time rather than apply for reinstatement; denial of a new application, unlike denial of a reinstatement application, cannot result in immediate loss of Medicare coverage.90

In short, the entire system is extremely complicated and dense. Imagine trying to navigate these rules, requirements, and exceptions knowing that any mistake could lead to losing a significant portion—or even all—of your income.

Many beneficiaries do not understand the differences between the TWP, the EPE, the period of expedited reinstatement, and the provisions regarding extended Medicare coverage. Most are not even aware of their existence. According to the SSA’s 2015 National Beneficiary Survey, just 34.6 percent of SSDI recipients are aware of the TWP; only 16.2 percent know about the period of extended Medicare coverage; and a mere 13.9 percent know they are eligible for expedited reinstatement.91

Understandably, then, some SSDI recipients are fearful of work. Approximately 11.7 percent of nonworking SSDI beneficiaries say they do not work because they “[do] not want to lose cash or health insurance benefits”92—although it is worth reiterating that SSDI recipients’ greatest reason for not working is because they are too disabled to work.93 Moreover, when one interviewee for this report was asked whether fear of losing benefits ever made him less likely to search for work or accept a job, he responded, “99 percent of the time.”94

Even among SSDI recipients who are employed, there is great trepidation about earning above the SGA threshold. According to the SSA, more than 31.3 percent of employed SSDI beneficiaries reported working fewer hours or earning less than they were able.95 Among this 31.3 percent, the most commonly cited causes for reducing one’s earnings are “wanted to keep Medicare or Medicaid” (45.3 percent) and “wanted to keep cash benefit” (41.2 percent).96

Along with trapping many recipients in poverty, these poorly structured incentives deprive disabled individuals who desire to work for the meaning and purpose that can come from holding a job.97 Nearly 6 in 7 employed SSDI recipients say they are satisfied or somewhat satisfied with their jobs.98 And among working SSDI beneficiaries, there is widespread support for the statements that work provides “recognition or respect” (90.2 percent), a “feeling of accomplishment” (85.5 percent), and/or “interesting or enjoyable” experiences (85.2 percent).99

Again, however, most SSDI beneficiaries are too disabled to work. A host of academic, government, and other studies have shown that most SSDI recipients would not be able to lock down a job even if they lost their SSDI benefits, and if they did manage to find employment, they would likely receive low wages.100 Given this, making benefits conditional on employment would be devastating for many people in the program. Yet if beneficiaries want to work, they should have the ability to do so without having to worry about losing their benefits and being forced to forgo medical treatment or fall into poverty.

The policy recommendations detailed later in this report illustrate how SSDI’s complicated, poorly structured work incentives can be replaced with a number of simple incentives in order to grant SSDI beneficiaries greater financial freedom. Current recipients are often forced to choose between a paycheck and their SSDI benefits. By simplifying and improving the program’s work incentives, the government could continue to support SSDI beneficiaries while making it easier for them to support themselves.

Supplemental Security Income

“Dealing with my local Social Security office has not been a good time because they’re always finding issues that aren’t there and trying to kick me off benefits, and I have to prove I’m still disabled.”

– Nick, SSDI, SSI, and SNAP recipient from Missouri101

Supplemental Security Income (SSI) is the second-largest safety net program for people with disabilities. As of December 2021, it supported more than 6.4 million Americans with disabilities, roughly 1 in 6 of whom are children.102 Most states supplement the federal SSI benefit with additional cash assistance, and in nearly all states, SSI beneficiaries are also automatically eligible for Medicaid.103

SSI was designed to complement Social Security—Old Age, Survivor, and Disability Insurance.104 While Social Security replaces a certain share of workers’ pre-disability wages, SSI provides an income floor to disabled Americans with a history of low or no earnings. In 2013, SSI lowered the poverty rate for program recipients from 63 percent to 42 percent and reduced the poverty gap—the difference between beneficiaries’ income and the poverty line—by more than two-thirds.105

However, the program’s administrative burdens are quite substantial. SSI has an arduous, time-consuming application process that is similar to the SSDI process, and it rejects a comparable share of applicants. In fact, among people who submitted SSI applications from 2014 to 2016, 20.4 percent were rejected for technical reasons, 46.9 percent were rejected for medical reasons, and just 32.6 percent were awarded benefits.106

People who see those daunting odds and still decide to apply must successfully navigate a maze of legalese and technicalities and overcome several barriers, such as assets tests, complex or burdensome definitions of income, elaborate rules surrounding marriage, and extra Medicaid paperwork.

Asset tests

Unlike SSDI, which requires a thorough examination of applicants’ earnings histories, SSI measures applicants’ current resources. SSI recipients are limited to just $2,000 in asset holdings if they are single and just $3,000 if they are married,107 though exemptions are allowed for items such as a home, wedding rings, burial sites, and one car per household.108 Individuals who were disabled before age 26 can also accrue savings in an ABLE account, though the state can later revoke those savings.109 SSI asset limits have only been raised once since the program’s creation in 1972—in 1989—and that did not even make up for inflation at the time. To keep up with inflation today, limits would need to be more than four times as high as they were in 1972.110

Asset tests impose significant hardship on program beneficiaries. SSI recipients must remember a lengthy list of items that count toward asset limits and must intentionally keep their countable assets below the applicable threshold. Moreover, the $2,000 and $3,000 thresholds apply to gross assets, not net wealth, so a disabled American with $15,000 of assets and $14,000 of debt would not qualify for SSI, since they would have only $1,000 in net worth but $15,000 in assets. This one-sided look at only positive forms of wealth is extremely harmful, given that 56.6 percent of SSI recipients have some type of debt.111 (see Figure 3) Indeed, 41 percent of SSI recipient households have $5,000 or more in debt, which is above the countable asset limit.112

Figure 3

With low earnings, capped assets, and uncapped debts, SSI recipients find it difficult to accrue even modest wealth. Nearly 3 in 10 SSI recipients have zero or negative net worth, and another 1 in 4 have less than $5,000.113 (see Figure 4) Unsurprisingly, then, SSI recipients have far less wealth than members of the general population. In 2019, median net worth was $3,025 for SSI recipient households, compared with $118,200 for all U.S. households.114 Excluding home equity, SSI households’ median net worth was just $700, while the median wealth of all households was $41,200.115 A small number of SSI households are able to build some wealth by accruing assets that do not count against the limit, such as a home, one vehicle, and wedding and engagement rings,116 but such households are not representative of SSI recipients more generally.

Figure 4

‘I don’t get enough money to survive, let alone save a few dollars’

Interviewees also touched on the traps of asset limits. Below are two of their stories:

“I was unable to pay any bills when I lost SSI and SSDI for two months. I couldn’t pay my rent, phone, credit card bill, car insurance, gas, or food. I don’t get enough money to survive, let alone save a few dollars. And I am legally not allowed to have more than $2,000.”

– Nick, SSDI, SSI, and SNAP recipient from Missouri

“The Catch-22 that we found ourselves in a couple years ago was we needed to raise $50,000 for an accessible vehicle. Well, how am I supposed to save $50,000 if I can’t save $2,000 without being penalized? And so, the goal of the vehicle was to be more independent … and I can’t get to that point because I don’t know if it’s illegal, frowned upon, or what, but we’re not able to save more than that $2,000.”

– Marcos Castillo, SSDI and SSI recipient from Arizona

Complex or burdensome definitions of income

SSI benefits are reduced by 50 cents for every $1 of wages in excess of $65 each month and by a full $1 for every $1 of “unearned income” after the first $20 each month,117 with Social Security checks counting as “unearned income.” Meanwhile, under the in-kind benefits test,118 SSI recipients can have their benefits reduced by the value of any food or housing assistance provided to them by other individuals.119 So, if a friend or family member buys them dinner or if they live with a roommate and pay less than their proportional share of the rent, their benefits are reduced by the dollar value of those seemingly normal occurrences.120 Yet obtaining accurate information for the in-kind benefits test is incredibly complicated and costly, which is why no other safety net program applies a similar test.121 Notably, the SSA’s instructions on how to access in-kind support are roughly 250 single-spaced pages.122

Elaborate rules surrounding marriage and “deeming”

When two SSI recipients marry each other, their maximum joint benefit is $1,261 per month as of 2022—approximately 25 percent lower than the benefits going to two single recipients: $1,682.123 Furthermore, the income disregards, which exempt the first $65 of earned income and $20 of unearned income each month from SSI income limits, do not increase for married couples.124 Finally, asset limits for married couples in which one or both parties are SSI beneficiaries are $3,000, just 50 percent higher than the limit for single recipients.125 Understandably, then, many SSI beneficiaries try to stave off poverty by avoiding marriage.126 Yet the SSA treats legally unmarried couples as married if they are viewed as presenting themselves that way to the community.127 Also, under a process known as “deeming,” part of the income and resources of a spouse who does not receive SSI is considered available and counted against the eligibility of an applicant or recipient and could result in the reduction of their benefit amount.128 And when a disabled SSI recipient marries a nonrecipient, the SSI recipient receives the lesser of either the individual benefit or the couple benefit, after applying all relevant disregards.129

Additional tedious Medicaid paperwork

In 34 states and the District of Columbia, SSI recipients are automatically enrolled in Medicaid; in eight states, they automatically qualify but must nonetheless fill out a separate Medicaid application; and in eight states—known as 209(b) states—eligibility requirements for Medicaid differ from SSI requirements.130 Therefore, in 16 states, SSI recipients are expected to fill out additional paperwork before receiving Medicaid coverage. Approximately 9 percent of SSI recipients live in 209(b) states,131 where the income limits and asset limits may differ from national standards.132

Every time I fill out paperwork, I need help from my partner to complete it. It's, you know, it's a lot. It's always many pages. They always ask some kind of the same questions over and over. Anonymous SSDI recipient from California

The complex rules surrounding asset tests, income measurement, marital status, and Medicaid eligibility impose significant burdens on SSI recipients. And if these rules seem overly cumbersome, it should be noted that they represent only the tip of a giant administrative iceberg. SSI recipients must also master rules about how benefits are affected by periods of temporary institutionalization in nursing homes or other medical facilities, how other safety net benefits can and cannot be applied to the income disregards, and other highly legalistic distinctions. The more than 1 million joint SSI-SSDI beneficiaries in the United States must, likewise, navigate the complexities of receiving dual benefits.133 Simply put, disability benefits have become a convoluted maze filled with many financial dead ends. Radically simplifying them could prove of enormous benefit to millions of Americans.

Housing programs

“I know if I lose SSDI, I’m not going to be able to afford this apartment.”

– Nicole LeBlanc, SSDI recipient

Given the lack of accessible and affordable housing in the United States,134 targeted public housing programs have the potential to improve housing security for particularly impacted communities, including disabled people. However, such programs have several administrative burdens baked into their eligibility criteria and application processes. Such burdens disproportionately affect people already experiencing homelessness, who often experience higher rates of mental health conditions or executive functioning disorder, which can make complicated processes such as housing applications even harder to complete.135 In one study examining older adults experiencing homelessness, nearly one-third of participants had executive functioning disorder.136 Moreover, the negative psychological effects of experiencing homelessness can affect individuals before they even begin to apply for programs and endure “the stress of a prolonged, convoluted, and (not infrequently) humiliating bureaucratic process.”137

Section 811 Supportive Housing for Persons with Disabilities is one program tasked with providing public assistance for disabled people and their families in the form of a mainstream voucher for “extremely low-income” households that include at least one disabled adult under age 62.138 Disability is defined more broadly in Section 811 than in Section 8 or other public housing programs:139 Section 811 does not require individuals to receive SSI or other benefits in order to qualify. This allows individuals with less severe disabilities or individuals who are not yet eligible for SSI or SSDI to access critical services.140 However, many Section 811 housing units require referrals from other social service agencies, such as state vocational rehabilitation agencies.141 The main goal of the program is to provide disabled people with housing that can be connected to other daily living services, such as case management, if necessary.142

Unlike Section 8 funds, Section 811 funds are often provided directly to nonprofit specialized tenant or rehabilitation organizations that can provide services to beneficiaries.143 With no more than 25 percent of units in eligible multifamily homes across the United States allowed to go to people with Section 811 vouchers and 5 percent of all new multifamily units required to be wheelchair accessible, waitlists for accessible and affordable units can be months or even years long.144 And despite having a more expansive definition of disability than other public housing programs, Section 811 still imposes qualification burdens on many people, even without making them outright ineligible. These include making it more difficult for people with criminal records, who face much higher rates of disability and homelessness,145 as well as those with inconsistent rental histories, to gain vouchers.146

Section 811 housing applications can differ by state and housing authority. For example, if a state accepts only online applications, paper applications are rejected. Navigating where to find available housing units, whether online or in-person, and communicating with various property managers or organizations is an added burden and could present numerous accessibility barriers. Applicants also must immediately update the housing office of any information changes and respond to periodic notices asking if they want to stay on the waitlist; any delay could result in them being kicked off the waitlist.147

Less than 1 percent of housing in the United States is accessible for wheelchair users. Therefore, regardless of many disabled people’s enrollment in public housing assistance programs, they may need to request housing accommodations.148 Inaccessible and unaffordable housing is all too common, yet landlords can deny accommodation requests that they deem “unreasonable.”149 For instance, disabled people often have to provide their landlord proof that the accommodation is necessary based on disability, and this can be more difficult for people with invisible disabilities, including mental health disabilities. Specifically, medical documentation may be necessary to substantiate the request for the accommodation, which can be a significant invasion of privacy.

Housing is a fundamental human right. Disabled people deserve affordable and accessible housing free of administrative burdens.

Supplemental Nutrition Assistance Program

“My Department of Family Services local office is actually like an hour away. … Anytime I have an issue [with food stamps], they only let you call one number here in Missouri … it’s for the state call center, and usually, it’s at least a three-hour wait every time you have to call—if you’re lucky, if you even get someone. So, it’s usually quicker to drive the hour and come back, so I had to do that a few times.”

– Nick, SSDI, SSI, and SNAP recipient from Missouri

The Supplemental Nutrition Assistance Program (SNAP) is another key benefit for disabled people, who experience food insecurity at higher rates than nondisabled people.150 In recent years, program expansions have allowed SNAP participants all over the country to spend their benefits on groceries purchased online and delivered to their door.151 Other temporary improvements—a response to increased food insecurity during the COVID-19 pandemic—include some states eliminating in-person visits, delaying recertification, and dropping work requirements.152 But disabled people still face many barriers when applying for SNAP. For example, the program uses a narrow definition of disability that depends heavily on the receipt of other federal or state disability benefits153 and has asset limits.154 Additionally, each state has a different application process and form, which could potentially lead to increased difficulties if disabled applicants move.

Categorical eligibility has the potential to improve program enrollment for eligible households by reducing the burdens imposed on them. Since January 2022, broad-based categorical eligibility, whereby households below an income threshold and usually receiving—or approved to receive—benefits such as Temporary Assistance for Needy Families are automatically eligible for SNAP, has been implemented in 44 jurisdictions.155 The majority of these jurisdictions have also eliminated asset tests for SNAP; however, households must still meet a certain net income threshold to be eligible.

After an often-lengthy process that involves proof of income and an eligibility interview, additional processes, such as recertification, can impose significant burdens on disabled people. Cases often automatically close when households do not respond to recertification or interview requests, which are often sent by mail.156 Increasing the time between recertification requests could reduce the administrative burdens of providing paperwork and attending in-person interviews, which particularly affect disabled people and households.

Student loan discharge

Student loan borrowers are eligible for debt relief under total and permanent disability (TPD) discharge.157 This program largely uses the SSA’s definition of disability but requires that individuals meet the definition for 60 months instead of 12 months.158 Researchers and advocates have described this discharge process as “byzantine” and full of “complex and unnecessary administrative hurdles.”159 And the U.S. Department of Education imposed additional burdensome requirements in 2012; it now only accepts documentation from borrowers that the SSA has categorized as “Medical Improvement Not Expected.” This regulatory change caused many SSA beneficiaries who met the requirements for TPD to be ineligible for relief.160 Moreover, if borrowers miss any application, documentation, and monitoring period requirements, their loans are reinstated. Failure to submit annual income information—in short, missing a request for paperwork—often triggers loan reinstatement, even though the borrower remains eligible.161

The Department of Education has taken some action to address the burdens placed on disabled student loan borrowers. In 2021, it announced pandemic relief for more than 230,000 borrowers who qualified for TPD discharge, reversing loans reinstated since March 2020 and waiving the requirement for earnings documentation.162 The department also finalized a rule in October 2022 that includes, among other changes, regulations that, once in effect, will make several permanent improvements to the program:163

  • Broadening the accepted SSA disability statuses
  • Eliminating the three-year income monitoring requirement and its hefty paperwork burden
  • Expanding the types of medical professionals who can certify a borrower’s total and permanent disability164

Even with these reforms, improving data sharing between the Department of Education, the Department of Veterans Affairs, and the SSA is still necessary to ensure eligible borrowers are identified and notified in a timely manner. In addition, increased automatic relief for borrowers with disabilities, and borrowers more broadly, would eliminate the burden of navigating targeted discharge.165

Paratransit

In 2017, more than 25.5 million Americans self-reported having a disability that affects their ability to utilize transportation.166 While the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 mandate accessibility standards, transportation remains a huge impediment for disabled people to participate in their communities. Disabled people are much less likely than nondisabled people to travel using their own vehicles and much more likely to use public transportation.167 While a majority of bus systems are now wheelchair accessible, a large percentage of train and subway stations remain inaccessible.168 A higher percentage of people with disabilities also live in rural areas with limited or no access to public transportation. In fact, 1 in 3 adults living in rural areas have some type of disability.169

The ADA requires that public transportation agencies provide complimentary paratransit services for disabled individuals who may have difficulty using fixed-route transit options such as subways and buses. Yet even when paratransit is available, disabled people often report significant administrative burdens when obtaining and using the services.170 Paratransit programs require individuals to schedule rides at least 24 hours in advance, and individuals are often required to schedule large windows of time for pickup and drop-off.171 This often means that individuals must book pickup times that are at least an hour in advance of when they need to be at their appointment or work so as not to be late. This means that they often must wait outside for extended periods, no matter the weather, and that a single doctor’s appointment could take up a whole afternoon, burning up already limited energy and time allotments.

Job accommodations

“The stereotype is that there are so many people trying to fake benefits, and I used to see stories in the media that I think people need to hear—you know, the stories of actual people who would love to be working and just physically can’t.”

– Debra Guckenheimer, SSDI recipient from California

Disabled people have the right to reasonable accommodations under Title I of the ADA.172 This means that they can request changes ranging from structural workplace adjustments to communications or assistive technology accommodations.173 Access to accommodations is especially critical given that almost 80 percent of nonemployed disabled people report facing employment barriers due to their disability.174 Yet individual employers may handle requests for accommodations differently, and often, the process is not well publicized.175 It also typically begins only when a worker initiates the request.176

Most employers require that employees requesting accommodations provide medical documentation of the employee’s disability. Some even require a doctor’s note for specific accommodations. This process can be invasive; and while the ADA does limit what employers can legally ask for, most employees do not know their rights, and the rules are not proactively enforced. Employers sometimes ask employees for their entire medical records, which the ADA specifically prohibits.177 Additionally, individuals who coordinate employee accommodations often do not have specific backgrounds in disability or medicine and may ask invasive questions or for extensive, unneeded evaluations. This can be mentally and physically taxing for individuals who are just looking for what they need to do their job well.

Those newly disabled, including the millions of people now living with long COVID and its associated conditions, may not have a formal diagnosis or clear documentation.178 They may, likewise, not understand their rights as disabled employees and/or may not identify as disabled. Furthermore, these employees may see their job performance drop or have to go on permanent disability, even though they could have kept doing their job with more information or some accommodations.

Policy recommendations

“It’s a choice for this program [SSDI] that it’s not a simple thing where there’s just a clear booklet of, like, ‘Here’s what you do.’”

– Debra Guckenheimer, SSDI recipient from California

Describing every single improvement needed to mitigate administrative burdens for people with disabilities would require a list too extensive and specialized—by location, program, and individual disability need—to fit into one report. Ultimately, the creators and directors of programs meant to help disabled people need to speak to applicants and participants and intentionally design reforms with the explicit goal of shifting as many burdens as possible off the individual and onto the state.179 The following is a nonexhaustive list of broad changes that should act as guideposts for local, state, and federal policymakers looking to improve how the government serves disabled people.

Recommendations to help both disabled and nondisabled people apply for all assistance programs

  • Increase response periods: Federal agencies should increase the length of time in which beneficiaries or applicants can respond to requests and notifications about benefits, as well as the number of days that beneficiaries have to respond to requests for updated documentation. Agencies could also eliminate penalties for lack of response to written notices.
  • Increase flexibility in scheduling in-person interviews: Federal agencies should offer virtual interviews in addition to in-person interviews, while also increasing flexibility in scheduling in-person medical reviews.
  • Expand language offerings and accessibility: States should ensure that information about public benefits is accessible in a variety of English and non-English languages and formats, including plain language,180 larger text fonts, and Braille. They should also audit websites for applications or program information for accessibility and update them to meet the most recent version of the “Web Content Accessibility Guidelines.”181
  • Adopt a “no wrong door” policy: As delineated in the Biden administration’s 2021 executive order focused on customer experience and service delivery, agencies should coordinate to create a universal federal application process among safety net programs.182 This would reduce the time and energy burdens on both applicants and administrators by automatically enrolling eligible applicants in federal programs.183
  • Increase accessibility of transportation and housing infrastructure: Both the federal government and state governments should increase investment in the construction of accessible and affordable housing. Specifically, the Uniform Federal Accessibility Standards, via Section 504 of the Rehabilitation Act, should be amended to increase the percentage of housing units required to be accessible for people with mobility disabilities.184 Paratransit programs also need increased funding in order to make it easier for disabled people to schedule rides for appointments, so that they do not need to spend hours waiting for transit. Indeed, transit services for disabled people should be as easily usable and reliable as other forms of public transit.
Other general recommendations
  • Work requirements should be abolished, as they have proven ineffective overall,185 only serving to create more paperwork and opportunities to lose benefits through simple errors. This is especially necessary for people whose disability should exempt them from work requirements in the first place but who are still at risk of losing benefits due to the paperwork involved.186 Governments should replace work requirements with supports that help remove barriers for participants and help individuals engage in activities that best meet their needs and goals.
  • The frequency and difficulty of recertification requirements should be reduced.
  • The application process should be combined with those of other programs so that applying to one program submits an application to all others for which one is eligible.
  • Paperwork and in-person interview requirements should be kept to a minimum.
  • Agencies should do more outreach and marketing efforts to increase awareness of benefit availability.
  • More needs to be done to coordinate the sharing of eligibility information between federal and state agencies, especially for people applying for multiple programs.187
  • Agencies administering programs need to be adequately staffed and funded, so that they are able to efficiently process claims and assist participants. Few, if any, are currently staffed and funded enough to truly meet demand.188

Recommendations for Social Security Disability Insurance

  • Eliminate the five- and 24-month waiting periods: No disability recipient should be forced to wait five months for cash benefits or 24 months for Medicare coverage. SSDI recipients often have poor health, and all have low incomes, so it is crucial that they start receiving income and health benefits as soon as they are approved.189
  • Trust applicants’ doctors: Disabled applicants should not be forced to go through redundant medical exams with government-assigned doctors who do not specialize in their disability in order to prove their inability to work when they have already been diagnosed by their own medical expert. This is a waste of time and resources and, as interviewees described, can be traumatizing or even cause further injury. Applicants should be allowed to see their own doctors and have those diagnoses trusted.
  • Allow SSDI applicants to skip the “reconsideration” stage of the application process: The reconsideration stage gives applicants a chance to provide additional documentation or show that their conditions have worsened since they first applied for benefits. Some applicants benefit from reconsideration, but more than 9 in 10 are rejected at this stage.190 If applicants wish, they should be allowed to request a hearing immediately following a medical rejection at the first stage of the application process.
  • Hire more administrative law judges to reduce wait times and the number of backlogged cases: As part of its Compassionate and Responsive Service (CARES) plan, the SSA has significantly reduced wait times at the hearing level.191 However, the plan’s original goal was to reduce processing times to 270 days by the end of fiscal year 2020; as of last year, the average processing time was still 326 days.192 By hiring more ALJs, the SSA could further speed up its hearing process and issue approvals or denials in fewer than 270 days.
  • Allow former SSDI recipients to continue receiving Medicare coverage even if they are denied for expedited reinstatement: No one should have to risk losing their Medicare coverage when they request that their cash benefits be reinstated. The current provisions that deny people their Part A coverage should be eliminated.193
  • Eliminate the TWP, the EPE, and the SGA benefit cliff: SSDI’s current work incentives should be replaced with a simpler system; expedited reinstatement should be universal for all former SSDI applicants, even those who left the program more than five years ago. And in place of the provisions eliminating all benefits when workers earn above the SGA threshold, workers should be subject to a benefit phase-out in which an extra $1 in earnings reduces benefits by less than $1. To ensure that SSDI continues to only benefit disabled Americans who truly need it, the program should fully fund all continuing medical disability reviews.194 A more basic reform could be to raise the TWP threshold to match the SGA threshold so that recipients do not use up their nine months while earning between the $970 and $1,350 thresholds in 2022.

Recommendations for Supplemental Security Income

  • Eliminate or modify asset tests: Ohio Sherrod Brown (D) and Rob Portman (R) have proposed raising SSI’s asset limits to $10,000 for single recipients and $20,000 for couples, while also adjusting future asset limits for inflation.195 This would be a tremendous step forward, yet the proposal could be improved by raising the asset limits even higher and by allowing debts to offset assets. Another option would be to eliminate asset tests entirely, which would remove the significant administrative burdens of tallying and documenting all assets and allow SSI households to save and accrue wealth.196 This may, however, allow a small number of high-wealth, low-income individuals to qualify for SSI and potentially undermine the program’s political popularity.197 Overall, 74 percent of Americans support raising asset limits to Brown-Portman levels, while 64 percent—including 55 percent of Republicans—support eliminating asset tests entirely.198
  • Make SSI an individual-centered program: Under this reform, all SSI beneficiaries would receive single benefits, regardless of their marital status. This would eliminate all marriage penalties and also “deeming,” as well as other complicated rules about how couples share resources with each other.
  • Eliminate in-kind benefits tests: Friends, family members, and others should not be discouraged from providing food or housing assistance to their disabled loved ones. In-kind benefits tests are unjustifiable and create significant burdens that both recipients and administrators have to track. SSI should follow the lead of every other safety net program, including SSDI, and eliminate these tests.
  • Auto-enroll SSI beneficiaries in Medicaid in all 50 states: SSI recipients should be automatically enrolled in Medicaid without having to fill out any additional paperwork or meet new program requirements. This is already the case in 34 states; it is time that auto-enrollment became the national standard.
  • Update the income disregard thresholds: The $20 unearned and $65 earned income disregards have remained fixed since SSI was first created in 1974.199 Had these thresholds risen in line with inflation, they would be $127 and $414, respectively, today.200 And had the income disregards risen in line with average wage growth, as measured by the SSA, they would have been $151 and $490, respectively, as of 2021.201

Conclusion

“It [trying to understand SSDI income limits] is mentally exhausting. It’s anxiety-provoking.”

– Nicole LeBlanc, SSDI recipient

In all the interviews conducted for this report, two things stood out.

First, every single interviewee described incredibly challenging circumstances and then reiterated how lucky they felt that the application process was not as difficult as it could have been because they either had a partner who could take off work to help them, had some income from long-term disability insurance to tide them over while they waited, had a medical provider that kept records longer than most, or were matched up with a good disability lawyer, counselor, or government caseworker.

An anonymous SSDI recipient from California shared:

I’m one of these really lucky ones who has all of these things kind of stacked for me, and I still just feel like the process of getting and keeping these benefits has been unbelievable. It’s been humiliating, and I would go so far as to say it has been Kafkaesque. It has just been ridiculous.202

Second, all the interviewees were very grateful to CAP for talking about the issue. Administrative burdens in the disability community barely get any attention from the media or policymakers, despite the fact that they affect so many people and families across the nation—families that are merely trying to get enough support to live and participate in society.

Disabled Americans deserve access to the basic supports they need to function in the modern world. Administrative burdens make the already challenging lives of people with disabilities immensely more difficult; as a result, the U.S. economy and society is less equal, less fair, and less strong. Therefore, it is absolutely essential that federal and state governments reduce burdens and barriers to give everyone, including disabled Americans, the opportunity to thrive in their communities.

Acknowledgments

The authors would like to thank Bradley Custer, Jill Rosenthal, Seth Hanlon, Alan Cohen, Nicole Lee Ndumele, Arohi Pathak, Lily Roberts, and Ashley Burnside for their helpful feedback, as well as Kyle Ross, Anona Neal, and Camila Garcia for their thorough fact-checking.

* Correction, December 9, 2022: The graphics for Figure 1 have been updated to more clearly and accurately display the data.

Endnotes

  1. Debra Guckenheimer, SSDI recipient from California, interview with authors via Zoom, June 14, 2022, on file with authors.
  2. Justin Schweitzer, “How To Address the Administrative Burdens of Accessing the Safety Net” (Washington: Center for American Progress, 2022), available at https://www.americanprogress.org/article/how-to-address-the-administrative-burdens-of-accessing-the-safety-net/.
  3. Ibid.
  4. Suzanne Wikle, “Administrative Burdens Exacerbate Inequities and Must Be Reduced,” Center for Law and Social Policy, August 23, 2021, available at https://www.clasp.org/blog/administrative-burdens-exacerbate-inequities-and-must-be-reduced/; Ashley Burnside, “The Biden Administration Should Increase LGBTQ Public Benefit Access and Data Collection,” Center for Law and Social Policy, February 18, 2021, available at https://www.clasp.org/blog/biden-administration-should-increase-lgbtq-public-benefit-access-and-data-collection/; Pamela Herd, “How Administrative Burdens Are Preventing Access to Critical Income Supports for Older Adults: The Case of the Supplemental Nutrition Assistance Program: The Case of the Supplemental Nutrition Assistance Program,” Public Policy & Aging Report 25 (2015): 52–55, available at https://sbgg.org.br/wp-content/uploads/2015/07/3.pdf; Pamela Herd and Donald Moynihan, “How Administrative Burdens Can Harm Health,” Health Affairs, October 2, 2020, available at https://www.healthaffairs.org/do/10.1377/hpb20200904.405159/full/.
  5. Manasi Deshpande and Yue Li, “Who Is Screened out? Application Costs and the Targeting of Disability Programs” (Cambridge, MA: National Bureau of Economic Research, 2017), available at https://www.nber.org/system/files/working_papers/w23472/w23472.pdf; Donald Moynihan, Pamela Herd, and Hope Harvey, “Administrative Burden: Learning, Psychological, and Compliance Costs in Citizen-State Interactions,” Journal of Public Administration Research and Theory 25 (1) (2015): 43–69, available at https://doi.org/10.1093/jopart/muu009.
  6. Steven Woolf, “Social and Economic Policies Can Help Reverse Americans’ Declining Health” (Washington: Center for American Progress, 2021), available at https://www.americanprogress.org/article/social-economic-policies-can-help-reverse-americans-declining-health/; Robert H. Shmerling, “Is our healthcare system broken?”, Harvard Health Publishing, July 13, 2021, available at https://www.health.harvard.edu/blog/is-our-healthcare-system-broken-202107132542.
  7. Center for American Progress, “Data on Poverty in the United States,” available at https://www.americanprogress.org/data-view/poverty-data/ (last accessed October 2022).
  8. Cannon Disability Law, “The Burden To Prove Disability Is on You,” January 26, 2021, available at https://cannondisability.com/blog/the-burden-to-prove-disability-is-on-you/.
  9. Schweitzer, “How To Address the Administrative Burdens of Accessing the Safety Net.”
  10. Hilary W. Hoynes, Nicole Maestas, and Alexander Strand, “Legal Representation in Disability Claims” (Cambridge, MA: National Bureau of Economic Research, 2022), available at https://www.nber.org/system/files/working_papers/w29871/w29871.pdf.
  11. The majority of quotes featured throughout this report are based on CAP’s interviews with these individuals.
  12. Sarah Ayres Steinberg, “The Safety Net Is Good Economic Policy: What Rep. Paul Ryan Gets Wrong About the War on Poverty” (Washington: Center for American Progress, 2014), available at https://www.americanprogress.org/article/the-safety-net-is-good-economic-policy/.
  13. Alexandra Cawthorne Gaines, Bradley Hardy, and Justin Schweitzer, “How Weak Safety Net Policies Exacerbate Regional and Racial Inequality” (Washington: Center for American Progress, 2021), available at https://www.americanprogress.org/article/weak-safety-net-policies-exacerbate-regional-racial-inequality/.
  14. Schweitzer, “How To Address the Administrative Burdens of Accessing the Safety Net.”
  15. Pamela Herd and Donald Moynihan, “How Administrative Burdens Make Government Less Effective and What to Do About It,” Institute of Public Management and Economic Development, Autumn 2019, available at https://www.economie.gouv.fr/igpde-editions-publications/comparative-analysis_n5.
  16. Schweitzer, “How To Address the Administrative Burdens of Accessing the Safety Net.”
  17. Adrian, SSI recipient from California, interview with authors via Zoom, June 22, 2022, on file with authors.
  18. The Economist, “It’s expensive to be poor,” September 3, 2015, available at https://www.economist.com/united-states/2015/09/03/its-expensive-to-be-poor; Stephen LaConte, “People Who Live In Poverty Are Sharing The Ways Their Lives Are Actually MORE Expensive Than Rich People’s, And It’s Eye-Opening,” BuzzFeed, March 16, 2021, available at https://www.buzzfeed.com/stephenlaconte/expensive-to-be-poor-examples-reddit; Karen Weese, “Why it costs so much to be poor in America,” The Washington Post, January 25, 2018, available at https://www.washingtonpost.com/news/posteverything/wp/2018/01/25/why-it-costs-so-much-to-be-poor-in-america/; Allison Nobles, “Poverty is Expensive,” The Society Pages, November 27, 2019, available at https://thesocietypages.org/trot/2019/11/27/poverty-is-expensive/; Barbara Ehrenreich, “It Is Expensive to Be Poor,” The Atlantic, January 13, 2014, available at https://www.theatlantic.com/business/archive/2014/01/it-is-expensive-to-be-poor/282979/.
  19. Sarah Hawthorne, “7 Hidden Costs of Disability,” Medium, August 22, 2021, available at https://medium.com/@sarahhawthorne/7-hidden-costs-of-disability-f2756645723f; Zachary Morris, Nanette Goodman, and Stephen McGarity, “Living with a disability is very expensive – even with government assistance,” The Conversation, March 23, 2021, available at https://theconversation.com/living-with-a-disability-is-very-expensive-even-with-government-assistance-157283; Sophie Mitra and others, “The hidden extra costs of living with a disability,” The Conversation, July 25, 2017, available at https://theconversation.com/the-hidden-extra-costs-of-living-with-a-disability-78001.
  20. Nanette Goodman and others, “The Extra Costs of Living with a Disability in the U.S. — Resetting the Policy Table” (Washington: National Disability Institute, 2020), available at https://www.nationaldisabilityinstitute.org/wp-content/uploads/2020/10/extra-costs-living-with-disability-brief.pdf.
  21. Rebecca Vallas and others, “Economic Justice Is Disability Justice” (Washington: The Century Foundation, 2022), available at https://tcf.org/content/report/economic-justice-disability-justice/.
  22. Jasmine E. Harris, “Taking Disability Public,” University of Pennsylvania Law Review 169 (9) (2021): 1681–1749, available at https://scholarship.law.upenn.edu/faculty_scholarship/2743.
  23. Schweitzer, “How To Address the Administrative Burdens of Accessing the Safety Net.”
  24. Annie Lowrey, “The Time Tax: Why is so much American bureaucracy left to average citizens?”, The Atlantic, July 27, 2021, available at https://www.theatlantic.com/politics/archive/2021/07/how-government-learned-waste-your-time-tax/619568/.
  25. Christine Miserandino, “The Spoon Theory,” ButYouDontLookSick.com, 2003, available at https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ (last accessed October 2022).
  26. Devrupa Rakshit, “What The ‘Spoon Theory’ Means for People Living With Chronic Illnesses, Disabilities,” The Swaddle, August 6, 2021, available at https://theswaddle.com/what-the-spoon-theory-means-for-people-living-with-chronic-illnesses-disabilities/.
  27. Schweitzer, “How To Address the Administrative Burdens of Accessing the Safety Net.”
  28. Anonymous SSDI recipient, interview with authors via Zoom, June 23, 2022, on file with authors.
  29. Authors’ calculations based on U.S. Social Security Administration, “SSI Annual Statistical Report, 2020: Outcomes of Applications for Disability Benefits,” Table 60, Table 69, available at https://www.ssa.gov/policy/docs/statcomps/di_asr/2020 (last accessed October 2022).
  30. Patreon, “About Matthew Cortland,” available at https://www.patreon.com/mattbc (last accessed October 2022).
  31. Tampa Bay Times, “Doctors add fees to fill out forms,” February 22, 2003, available at https://www.tampabay.com/archive/2003/02/22/doctors-add-fees-to-fill-out-forms/; Bethany K. Laurence, “Will My Doctor Charge Me to Write a Letter for Social Security Disability?”, Disability Secrets, July 19, 2022, available at https://www.disabilitysecrets.com/resources/will-my-doctor-charge-me-write-letter-social-security-dis; Ben Glass, “Does My Doctor Have to Fill Out Disability Paperwork?”, Ben Glass Law, available at https://www.benglasslaw.com/library/does-my-doctor-have-to-fill-out-disability-paperwork-.cfm (last accessed October 2022).
  32. Kathleen Romig, “Policymakers Must Act to Address Social Security Service Crisis,” Center on Budget and Policy Priorities, May 26, 2022, available at https://www.cbpp.org/blog/policymakers-must-act-to-address-social-security-service-crisis.
  33. Azza Altiraifi, “A Deadly Poverty Trap: Asset Limits in the Time of the Coronavirus,” Center for American Progress, April 7, 2020, available at https://www.americanprogress.org/article/deadly-poverty-trap-asset-limits-time-coronavirus/.
  34. Emily Badger and Margot Sanger-Katz, “Take the Quiz: Could You Manage as a Poor American?”, The New York Times, January 28, 2020, available at https://www.nytimes.com/interactive/2020/01/28/upshot/administrative-burden-quiz.html.
  35. Anonymous SSDI and Medicare recipient from California, interview with authors via Zoom, July 22, 2022, on file with authors.
  36. Marcos Castillo, SSDI and SSI recipient from Arizona, interview with authors via Zoom, July 13, 2022, on file with authors.
  37. Anonymous SSDI recipient from California, interview with authors via Zoom, June 23, 2022, on file with authors.
  38. Anonymous SSI recipient from California, interview with authors via Zoom, June 23, 2022, on file with authors.
  39. Anonymous SSDI recipient from California, interview with authors via Zoom, June 23, 2022, on file with authors.
  40. U.S. Social Security Administration, “Monthly Statistical Snapshot, August 2022,” available at https://www.ssa.gov/policy/docs/quickfacts/stat_snapshot/2022-08.html (last accessed October 2022).
  41. Ibid. This section generally focuses on benefits going to disabled former workers.
  42. Nick Buffie, “SSI Reform Would Boost Incomes for Seniors and Disabled People,” Center for American Progress, September 20, 2021, available at https://www.americanprogress.org/article/ssi-reform-boost-incomes-seniors-disabled-people/.
  43. Authors’ calculations based on data from the U.S. Social Security Administration, “Social Security beneficiaries by benefit level,” available at https://www.ssa.gov/OACT/ProgData/benefitlevel.html?type=da (last accessed October 2022). The June 2022 average benefit level is from U.S. Social Security Administration, “Monthly Statistical Snapshot, June 2022,” available at https://www.ssa.gov/policy/docs/quickfacts/stat_snapshot/2022-06.html (last accessed October 2022).
  44. Kathy Ruffing, “It’s Hard to Qualify for Disability Insurance,” Center on Budget and Policy Priorities, August 7, 2015, available at https://www.cbpp.org/blog/its-hard-to-qualify-for-disability-insurance.
  45. Rebecca Cokley, “Social Security Across the Lifespan” (Washington: National Academy of Social Insurance, 2019), available at https://www.nasi.org/wp-content/uploads/2019/02/RCokley.pdf; Tim Zayatz, “Social Security Disability Insurance Program Worker Experience” (Woodlawn, MD: U.S. Social Security Administration, 2015), p. 23, available at https://www.ssa.gov/OACT/NOTES/pdf_studies/study123.pdf.
  46. Michelle Stegman Bailey and Jeffrey Hemmeter, “Characteristics of Noninstitutionalized DI and SSI Program Participants, 2013 Update” (Woodlawn, MD: U.S. Social Security Administration, 2015), available at https://www.ssa.gov/policy/docs/rsnotes/rsn2015-02.html. The Urban Institute has reported lower figures on this front, though even their estimates are startling. Favreault, Johnson, and Smith write: “Nearly half of beneficiaries rely on the program for the majority of their family income. A fifth receive nearly all of their income from DI. … Average family incomes are only about half as large for DI beneficiaries as nonbeneficiaries.” See Melissa M. Favreault, Richard W. Johnson, Karen E. Smith, “How Important is Social Security Disability Insurance to U.S. Workers?” (Washington: Urban Institute, 2013), available at https://www.urban.org/research/publication/how-important-social-security-disability-insurance-us-workers.
  47. Bailey and Hemmeter, “Characteristics of Noninstitutionalized DI and SSI Program Participants, 2013 Update.”
  48. Alexander Gelber and others, “Disability Insurance Income Saves Lives” (Stanford, CA: Stanford Institute for Economic Policy Research, 2022), available at https://siepr.stanford.edu/publications/health/disability-insurance-income-saves-lives.
  49. Juliette Cubanski, Tricia Neuman, and Anthony Damico, “Similar but Not the Same: How Medicare Per Capita Spending Compares for Younger and Older Beneficiaries” (San Francisco: Kaiser Family Foundation, 2016), available at https://www.kff.org/medicare/issue-brief/similar-but-not-the-same-how-medicare-per-capita-spending-compares-for-younger-and-older-beneficiaries/.
  50. Beneficiaries with extreme conditions can, at times, skip the 24-month waiting period as part of the Compassionate Allowances program. Such beneficiaries also have an expedited application process. For more information, see Disability Benefits Help, “Why is there a waiting period for Social Security disability benefits?”, available at https://www.disability-benefits-help.org/faq/waiting-period-social-security-disability-benefits (last accessed October 2022).
  51. Scott Szymendera, “Social Security Disability Insurance (SSDI) and Medicare: The 24-Month Waiting Period for SSDI Beneficiaries Under Age 65” (Washington: Congressional Research Service, 2009), p. 5, available at https://greenbook-waysandmeans.house.gov/sites/greenbook.waysandmeans.house.gov/files/2012/documents/RS22195_gb_0.pdf.
  52. Anonymous SSDI recipient from California, interview with authors via Zoom, June 23, 2022, on file with authors.
  53. Authors’ calculations based on data from U.S. Social Security Administration, “Annual Statistical Report on the Social Security Disability Insurance Program, 2021,” available at https://www.ssa.gov/policy/docs/statcomps/di_asr/ (last accessed October 2022).
  54. Ibid.
  55. To be approved for benefits, applicants generally must have worked five of the past 10 years. Applicants of different ages must also have worked for various fixed numbers of years, with the oldest applicants needing at least 10 years of total work history. For more information, see Nick Buffie and Dean Baker, “Rising Disability Payments: Are Cuts to Workers’ Compensation Part of the Story?” (Washington: Center for Economic and Policy Research, 2015), pp. 20-21, available at https://cepr.net/documents/rising-disability-payments-2015-10.pdf.
  56. Berger and Green, “What Is a Social Security Disability Technical Denial?”, available at https://www.bergerandgreen.com/faqs/what-is-a-social-security-disability-technical-denial/ (last accessed October 2022); Disability Attorneys of Michigan, “What is a Technical Denial of Social Security Disability Benefits?”, available at https://damichigan.com/what-is-a-technical-denial-of-social-security-disability-benefits/ (last accessed October 2022); Alison Barjaktarovich, “What Is a Technical Denial in a Disability Case?”, Disability Secrets, February 24, 2022, available at https://www.disabilitysecrets.com/resources/disability/disability-denials-and-appeals/technical-denial.htm.
  57. North Carolina Department of Health and Human Services, “Disability Determination Services,” available at https://www.ncdhhs.gov/divisions/disability-determination-services (last accessed November 2022).
  58. Authors’ calculations based on data from U.S. Social Security Administration, “Annual Statistical Report on the Social Security Disability Insurance Program, 2021.”
  59. Jason Baril, “What Are The Stages In The Social Security Disability Process?”, Disability Advantage Group, October 28, 2018, available at https://socialsecuritylawcenter.info/what-are-the-stages-in-the-social-security-disability-process/; Disability Benefits Center, “Social Security Disability Application Process,” available at https://www.disabilitybenefitscenter.org/social-security-disability-application-process (last accessed October 2022). ALJs occasionally send applications back to DDS instead of issuing their own rulings.
  60. Disability Benefits Center, “Social Security Disability Application Process.”
  61. Ibid.; Baril, “What Are The Stages In The Social Security Disability Process?”; Disability Advocates Group, “What are the steps for applying for Social Security Disability Benefits?”, available at https://ssdisabilityaccess.com/faqs/what-are-the-steps-for-applying-for-social-security-disability-benefits/ (last accessed October 2022).
  62. The Social Security Administration projects that average processing times will increase in 2022, but mostly due to a statistical mirage rather than to a genuine slowdown: “Average processing time for hearings is an annual figure. In FY 2022, we are resuming in-person hearings and prioritizing individuals who have waited the longest for a hearing. As we work through those oldest cases, we anticipate a temporary increase in the average processing time. Projections for the end of year monthly (September) processing time for hearings is 570 days for FY 2022, which we anticipate working down in FY 2023, assuming the President’s FY 2023 requested level.” See Kilolo Kijakazi, “Social Security Administration General Statement” (Woodlawn, MD: U.S. Social Security Administration, 2022), available at https://www.ssa.gov/budget/FY22Files/2022OP.pdf.
  63. Nick Buffie and others, “These 6 Priorities Show the Need for a Robust Domestic Discretionary Budget,” Center for American Progress, February 11, 2022, available at https://www.americanprogress.org/article/these-6-priorities-show-the-need-for-a-robust-domestic-discretionary-budget/.
  64. Disability Benefits Help, “Medical Records Needed When Applying For SSD Benefits,” July 28, 2018, available at https://www.disability-benefits-help.org/blog/medical-evidence; Disability Benefits Help, “What Is a Medical Report?”, August 3, 2018, available at https://www.disability-benefits-help.org/blog/medical-report-cost.
  65. Ibid.
  66. To see what documentation is needed for each type of disability, see U.S. Social Security Administration, “Disability Evaluation Under Social Security: Listing of Impairments – Adult Listings (Part A),” available at https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm (last accessed October 2022).
  67. Theresa Gruber, “Statement of Theresa Gruber: Testimony before the Senate Committee on Homeland Security and Governmental Affairs, Subcommittee on Regulatory Affairs and Federal Management,” U.S. Social Security Administration, May 12, 2016, available at https://www.ssa.gov/legislation/testimony_051216.html. Gruber appears to be referring to all disability applications, including SSI applications, in her remarks.
  68. Anonymous SSDI and Medicare recipient from California, interview with authors via Zoom, July 22, 2022, on file with authors.
  69. Disability Benefits Center, “Social Security Disability Application Process.”
  70. Anonymous SSDI recipient from California, interview with authors via Zoom, June 23, 2022, on file with authors.
  71. Nicole LeBlanc, SSDI recipient, interview with authors via Zoom, June 9, 2022, on file with authors.
  72. U.S. Social Security Administration, “Substantial Gainful Activity,” available at https://www.ssa.gov/oact/cola/sga.html (last accessed September 2022).
  73. U.S. Social Security Administration, “Work Incentives – Detailed Information,” available at https://www.ssa.gov/disabilityresearch/wi/detailedinfo.htm (last accessed September 2022); U.S. Social Security Administration, “Program Operations Manual System (POMS): DI 10505.015 Averaging Countable Earnings,” available at https://secure.ssa.gov/poms.nsf/lnx/0410505015 (last accessed September 2022); U.S. Social Security Administration, “SSR 83-35: Titles II and XVI: Averaging of Earnings in Determining Whether Work Is Substantial Gainful Activity,” available at https://www.ssa.gov/OP_Home/rulings/di/03/SSR83-35-di-03.html (last accessed September 2022). All Social Security rulings and acquiescence rulings are available at U.S. Social Security Administration, “Social Security And Acquiescence Rulings,” available at https://www.ssa.gov/OP_Home/rulings/rulfind1.html (last accessed September 2022).
  74. Along with the conditions surrounding income-smoothing and deductibility of disability-related expenses, two of the more notable conditions are “subsidy” and “unsuccessful work attempts.” Furthermore, the SSA counts income when it is earned, not when it is received. For more information, see Substance Abuse and Mental Health Services Administration, “Work Incentives: SSDI Only,” available at https://soarworks.samhsa.gov/article/work-incentives-ssdi-only (last accessed September 2022); U.S. Social Security Administration, “Red Book: A Summary Guide to Employment Supports for People With Disabilities Under the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) Programs” (Woodlawn, MD: 2020), p. 46, available at https://www.ssa.gov/pubs/EN-64-030.pdf; VCU Work Incentives Planning and Assistance National Training and Data Center, “Understanding Unsuccessful Work Attempts (UWA)” (Richmond, VA: 2020), available at https://vcu-ntdc.org/resources/WIPA_OtherResources/UnderstandingUWA2020_July.pdf; U.S. Social Security Administration, “SSR 83-35: Titles II and XVI.”
  75. U.S. Social Security Administration, “Trial Work Period: Earnings trigger a trial work period,” available at https://www.ssa.gov/oact/cola/twp.html (last accessed September 2022); Social Security National Press Office, “Social Security Fact Sheet: 2022 Social Security Changes” (Baltimore: U.S. Social Security Administration, 2021), available at https://www.ssa.gov/news/press/factsheets/colafacts2022.pdf.
  76. It is always the most recent 60 months that count, so the 60-month window is continuously being shifted. An SSDI recipient looking to avoid the EPE could earn above the TWP wage threshold for eight straight months, earn below the threshold for the next 52 months, and then again earn above the threshold for eight more months. The key point here is that no continuous set of 60 months contains more than nine TWP months, with the ninth month being the one that triggers the EPE. See U.S. Social Security Administration, “Trial Work Period: Earnings trigger a trial work period”; Disability Benefits Helps, “Know the Rules of the Social Security Disability Trial Work Period,” February 1, 2011, available at https://www.disability-benefits-help.org/blog/trial-work-period-rules.
  77. U.S. Social Security Administration, “Program Operations Manual System (POMS): DI 13010.210 Extended Period of Eligibility (EPE) – Overview,” available at https://secure.ssa.gov/poms.nsf/lnx/0413010210 (last accessed September 2022); University of Kentucky Human Development Institute, “Extended Period of Eligibility (EPE): 2021 Fact Sheet on Work Incentives,” available at https://hdi.uky.edu/wp-content/uploads/2021/01/2021_Extended_Period_of_Eligibility_Fact_Sheet-1.pdf (last accessed September 2022). U.S. Office of Employment Support, “Extended Period of Eligibility,” May 23, 2018, available at https://choosework.ssa.gov/blog/2018-05-23-extended-period-of-eligibility.
  78. U.S. Office of Employment Support, “Extended Period of Eligibility.”
  79. Ibid.; U.S. Social Security Administration, “Program Operations Manual System (POMS)”; U.S. Social Security Administration, “Red Book: SSDI Only Employment Supports,” available at https://www.ssa.gov/redbook/eng/ssdi-and-ssi-employments-supports.htm?tl=9#7=&a0=9 (last accessed September 2022).
  80. The worker may receive provisional cash benefits for up to six months while DDS makes a ruling on their medical eligibility. The worker’s benefit level may differ from the benefits they previously received, thanks to the new months of earnings that now form part of their work history. See VCU Work Incentives Planning and Assistance National Training and Data Center, “Understanding Expedited Reinstatement” (Richmond, VA: 2008), available at http://www.worksupport.com/documents/understandExpeditReinstateFeb08.pdf. (In 2008, this organization was known as the VCU Work Incentive Planning and Assistance National Training Center.)
  81. Ibid.
  82. This 24-month period is known as the “initial reinstatement period,” and it includes the months while DDS is making a medical ruling. For workers with unsteady earnings, the 24 months need not be consecutive. See U.S. Social Security Administration, “Program Operations Manual System (POMS): DI 13050.066 Initial Reinstatement Period – Title II,” available at https://secure.ssa.gov/poms.nsf/lnx/0413050066 (last accessed September 2022).
  83. U.S. Social Security Administration, “Red Book: SSDI and SSI Employment Supports,” available at https://www.ssa.gov/redbook/eng/ssdi-and-ssi-employments-supports.htm?tl=9#7=&a0=9 (last accessed September 2022).
  84. Ibid.
  85. U.S. Social Security Administration, “Medicare Information: General Information,” available at https://www.ssa.gov/disabilityresearch/wi/medicare.htm (last accessed September 2022).
  86. VCU Rehabilitation Research and Training Center, “Extended Medicare Provisions,” available at https://vcurrtc.org/resources/viewContent.cfm/319 (last accessed September 2022).
  87. Ibid.
  88. The latter premium will fall to $165 in 2023. This is the largest decrease, both in percent and dollar terms, since 2012. See U.S. Social Security Administration, “Medicare Information: General Information.” Medicare.gov, “2023 Medicare Costs,” available at https://www.medicare.gov/Pubs/pdf/11579-medicare-costs.pdf (last accessed November 2022); Medicare.gov, “Costs,” available at https://www.medicare.gov/basics/costs/medicare-costs (last accessed September 2022); Sarah O’Brien, “Medicare standard Part B premiums or drop by 3% next year, to $164.90,” CNBC, September 27, 2022, available at https://www.cnbc.com/2022/09/27/medicare-standard-part-b-premiums-will-drop-by-3percent-to-164point90-next-year.html; Tami Luhby and Betsy Klein, “Seniors to get a break on Medicare Part B premiums in 2023,” CNN, September 27, 2022, available at https://www.cnn.com/2022/09/27/politics/medicare-premiums-biden/index.html; Tricia Neuman, Juliette Cubanski, and Meredith Freed, “Monthly Part B Premiums and Annual Percentage Increases,” Kaiser Family Foundation, January 12, 2022, available at https://www.kff.org/medicare/slide/monthly-part-b-premiums-and-annual-percentage-increases/.
  89. VCU Rehabilitation Research and Training Center, “Extended Medicare Provisions.”
  90. Ibid.
  91. U.S. Social Security Administration, “National Beneficiary Survey: Disability Statistics, 2015,” available at https://www.ssa.gov/policy/docs/statcomps/nbs/index.html (last accessed October 2022).
  92. By far the most common reason for not working is “physical or mental condition prevents work” (90.9 percent). The next most common factors are “discouraged by previous work attempts” (25.2 percent), “workplace not accessible to people with his or her disability” (24.9 percent), “others do not think he or she can work” (23.8 percent), “cannot find a job he or she is qualified for” (23.3 percent), “employer will not give him or her a chance” (15.9 percent), and “lacks reliable transportation to or from work” (14.1 percent). All statistics reported in this section are the authors’ calculations based on data from U.S. Social Security Administration, “National Beneficiary Survey: Disability Statistics, 2015.” Estimates include SSDI-only beneficiaries and joint SSDI-SSI beneficiaries but exclude SSI-only beneficiaries.
  93. Ibid.
  94. Marcos Castillo, interview with authors via Zoom.
  95. More than 14.8 percent of recently employed SSDI beneficiaries did not respond to this question. After limiting the population to only those who responded, 36.8 percent of employed SSDI beneficiaries report working fewer hours or earning less than they could. These numbers are authors’ calculations based on data from U.S. Social Security Administration, “National Beneficiary Survey: Disability Statistics, 2015.”
  96. Authors’ calculations based on data from U.S. Social Security Administration, “National Beneficiary Survey: Disability Statistics, 2015.” The SSA uses the phrase “Medicare or Medicaid” rather than just “Medicare” since it asks the same questions of SSDI-only, SSI-only, and joint SSDI-SSI beneficiaries. SSI beneficiaries are eligible for Medicaid, as discussed in the next section. Respondents were allowed to select multiple reasons for their reduced hours, so the combined share who wanted to keep either their cash benefits or their medical insurance does not sum to 86.5 percent.
  97. Many people with disabilities are willing to work even for relatively low wages. According to the 2015 National Beneficiary Survey, the median reservation wage for nonworking SSDI-only recipients is just $12 per hour. For SSI-only and joint SSDI-SSI recipients, it is $10 per hour. For further information on reservation wages by age, type of disability, education level, self-reported health, and other measures, see U.S. Social Security Administration, “National Beneficiary Survey: Disability Statistics, 2015,” Table 16, Table 18, and Table 26.
  98. Authors’ calculations based on data from U.S. Social Security Administration, “National Beneficiary Survey: Disability Statistics, 2015.”
  99. Ibid.
  100. Nicole Maestas, Kathleen J. Mullen, and Alexander Strand, “Does Disability Insurance Receipt Discourage Work? Using Examiner Assignment to Estimate Causal Effects of SSDI Receipt,” American Economic Review 103 (5) (2013): 1797–1829, available at https://eml.berkeley.edu/~saez/course/maestas-mullen-strandAER13.pdf; Eric French and Jae Song, “The Effect of Disability Insurance Receipt on Labor Supply,” American Economic Journal: Economic Policy 6 (2) (2014): 291–337, available at https://www.aeaweb.org/articles?id=10.1257/pol.6.2.291; U.S. General Accounting Office, “Social Security Disability: Denied Applicants’ Health and Financial Status Compared With Beneficiaries’” (Washington: 1989), available at https://www.gao.gov/assets/hrd-90-2.pdf; Till von Wachter, Jae Song, and Joyce Manchester, “Trends in Employment and Earnings of Allowed and Rejected Applicants to the Social Security Disability Insurance Program,” American Economic Review 101 (7) (2011): 3308–3329, available at https://www.aeaweb.org/articles?id=10.1257/aer.101.7.3308; Jody Schimmel Hyde and April Yanuyan Wu, “Do Older SSDI Applicants Denied Benefits on the Basis of their Work Capacity Return to Work After Denial?” (Washington: Mathematica, 2018), available at https://mathematica.org/publications/do-older-ssdi-applicants-denied-benefits-on-the-basis-of-their-work-capacity-return-to-work.
  101. Nick, SSDI, SSI, and SNAP recipient from Missouri, interview with authors via Zoom, June 24, 2022, on file with authors.
  102. SSI also benefits nearly 1.1 million seniors, regardless of their disability status. See U.S. Social Security Administration, “Annual Statistical Supplement, 2022,” available at https://www.ssa.gov/policy/docs/statcomps/supplement/2022/7a.html (last accessed October 2022). The statistics cited in this section refer exclusively to federal benefits.
  103. Kirsten J. Colello and William R. Morton, “Medicaid Eligibility: Older Adults and Individuals with Disabilities” (Washington: Congressional Research Service, 2019), available at https://crsreports.congress.gov/product/pdf/R/R46111; U.S. Social Security Administration, “Understanding Supplemental Security Income SSI Benefits — 2022 Edition,” available at https://www.ssa.gov/ssi/text-benefits-ussi.htm (last accessed September 2022).
  104. The legislation creating SSI reads: “Building on the present social security program, it [the 1972 Social Security Amendments] would create a new Federal program administered by the Social Security Administration, designed to provide a positive assurance that the Nation’s aged, blind, and disabled people would no longer have to subsist on below-poverty-level incomes.” See Buffie, “SSI Reform Would Boost Incomes for Seniors and Disabled People.”
  105. Buffie, “SSI Reform Would Boost Incomes for Seniors and Disabled People.”
  106. Authors’ calculations based on data from U.S. Social Security Administration, “SSI Annual Statistical Report, 2020.” The authors use 2014–2016 data because a large share of applications from 2017 to 2019 had not received a final ruling as of summer 2020. By contrast, just 0.3 percent of applications submitted from 2014 to 2016 were awaiting decisions. The authors assume that 43 percent of these pending applications will be accepted and 57 percent will be rejected, consistent with results for applications already at the hearing level or above.
  107. The threshold is $3,000 when two SSI recipients marry each other as well as when an SSI recipient marries a nonrecipient. See U.S. Social Security Administration, “Understanding Supplemental Security Income SSI Resources — 2022 Edition,” available at https://www.ssa.gov/ssi/text-resources-ussi.htm (last accessed November 2022).
  108. Richard Balkus and Susan Wilschke, “Treatment of Married Couples in the SSI Program” (Woodlawn, MD: U.S. Social Security Administration, 2003), available at https://www.ssa.gov/policy/docs/issuepapers/ip2003-01.html; U.S. Social Security Administration, “Spotlight on Resources — 2022 Edition,” available at https://www.ssa.gov/ssi/spotlights/spot-resources.htm (last accessed September 2022).
  109. SSI recipients can save up to $100,000 in an ABLE account—a special type of account for people with disabilities—without losing their benefits. However, after the recipient passes away, the respective state Medicaid agency can revoke part or all of the recipient’s ABLE savings to offset Medicaid expenses paid on the beneficiary’s behalf. Therefore, for disabled individuals with high medical expenses and high mortality rates, ABLE accounts are not always particularly useful. See ABLE National Resource Center, “About ABLE Accounts,” available at https://www.ablenrc.org/what-is-able/what-are-able-acounts/ (last accessed September 2022); U.S. Social Security Administration, “Spotlight on Achieving a Better Life Experience (ABLE) Accounts — 2022 Edition,” available at https://www.ssa.gov/ssi/spotlights/spot-able.html (last accessed September 2022); The Arc, “How Death Affects the Money Left in ABLE Accounts and Special Needs Trusts,” January 23, 2022, available at https://thearc.org/resource/how-death-affects-the-money-left-in-able-accounts-and-special-needs-trusts/; ABLE National Resource Center, “Five Things You Need to Know about ABLE Accounts,” available at https://www.ablenrc.org/wp-content/uploads/2019/07/ANRC-5-Things-to-Know-about-ABLE-2018.pdf (last accessed September 2022); Darcy Chamberlin, “Regulations Governing ABLE Accounts,” The Voice 16 (3) (2022), available at https://www.specialneedsalliance.org/able-accounts/regulations-governing-able-accounts/.
  110. Kathleen Romig and Sam Washington, “Policymakers Should Expand and Simplify Supplemental Security Income” (Washington: Center on Budget and Policy Priorities, 2022), available at https://www.cbpp.org/research/social-security/policymakers-should-expand-and-simplify-supplemental-security-income.
  111. U.S. Census Bureau, “Debt for Households, by Type of Debt and Selected Characteristics: 2019,” available at https://www2.census.gov/programs-surveys/demo/tables/wealth/2019/wealth-asset-ownership/Debt_tables_dy2019.xlsx (last accessed August 2022). There is a slight discrepancy in the numbers reported by the Census Bureau. Table 2 states that 56.6 percent of SSI households have some debt, while Table 3 states that 44 percent have zero debt. The latter statistic implies that 56 percent of SSI households have at least some debt. Moreover, the Census Bureau reports that 41 percent of SSI households have $5,000 or more in debt, while 15.1 percent have debt between $1 and $4,999 and 44 percent have zero debt. These figures add up to 100.1 percent, meaning that the share of SSI households with $5,000 or more of debt may be 40.9 percent rather than 41 percent.
  112. Ibid.
  113. U.S. Census Bureau, “Wealth and Asset Ownership for Households, by Type of Asset and Selected Characteristics: 2019,” available at https://www2.census.gov/programs-surveys/demo/tables/wealth/2019/wealth-asset-ownership/Wealth_tables_dy2019.xlsx (last accessed August 2022).
  114. Ibid.
  115. Ibid.
  116. U.S. Social Security Administration, “Understanding Supplemental Security Income SSI Resources — 2022 Edition.”
  117. For workers without any unearned income, the $20 exclusion can be applied to income earned through work, effectively giving them an $85 earned income exclusion. See Buffie, “SSI Reform Would Boost Incomes for Seniors and Disabled People.”
  118. Nancy J. Altman, “The Pressing Need to Update, Expand, and Simplify SSI” (Woodlawn, MD: U.S. Social Security Administration, 2020), available at https://www.ssa.gov/oact/ssir/SSI20/2020_SSAB_Nancy_Altman_Statement.pdf; Social Security Advisory Board, “Statement on the Supplemental Security Income Program” (Washington: 2005), available at https://www.ssab.gov/wp-content/uploads/2021/03/2005_SSI_Encouraging_Work.pdf; Richard Balkus and others, “Simplifying the Supplemental Security Income Program: Options for Eliminating the Counting of In-kind Support and Maintenance” (Woodlawn, MD: U.S. Social Security Administration, 2008), available at https://www.ssa.gov/policy/docs/ssb/v68n4/v68n4p15.html.
  119. The total benefit reduction is capped at one-third of recipients’ monthly payments. See Balkus and others, “Simplifying the Supplemental Security Income Program: Options for Eliminating the Counting of In-kind Support and Maintenance.”
  120. The in-kind benefits test does not apply to other types of purchases—such as medical care or transportation—nor does it apply to food or housing provided by charities or the government.
  121. Joyce Nichols, “Source, Form, and Amount of In-kind Support and Maintenance Received by Supplemental Security Income Applicants and Recipients” (Woodlawn, MD: U.S. Social Security Administration, 2014), available at https://www.ssa.gov/policy/docs/ssb/v74n3/v74n3p39.html.
  122. Altman, “The Pressing Need to Update, Expand, and Simplify SSI”; Social Security Advisory Board, “Statement on the Supplemental Security Income Program. (Disclosure: Alan Cohen, a senior fellow at CAP, served as a member of the Social Security Advisory Board from 2014 to 2016.)
  123. U.S. Social Security Administration, “SSI Federal Payment Amounts,” available at https://www.ssa.gov/oact/cola/SSIamts.html (last accessed October 2022).
  124. Balkus and others, “Simplifying the Supplemental Security Income Program: Options for Eliminating the Counting of In-kind Support and Maintenance.”
  125. Balkus and Wilschke, “Treatment of Married Couples in the SSI Program.”
  126. Relative to members of the general population, SSI recipients are far less likely to be married. However, this does not imply that the entire gap in marriage rates between SSI recipients and the general population can be attributed to SSI marriage penalties. See Ibid.
  127. Balkus and Wilschke, “Treatment of Married Couples in the SSI Program”; Altman, “The Pressing Need to Update, Expand, and Simplify SSI.”
  128. Trinh Phan and Tracey Gronniger, “Legal Basics: Supplemental Security Income (SSI) Deeming” (Washington: National Center on Law and Elder Rights, 2018), available at https://ncler.acl.gov/NCLER/media/NCLER/documents/SSI-Deeming-Chapter-Summary.pdf.
  129. Balkus and Wilschke, “Treatment of Married Couples in the SSI Program.”
  130. Medicaid and CHIP Payment and Access Commission, “MACStats: Medicaid and CHIP Data Book” (Washington: 2021), pp. 103–105, available at https://www.macpac.gov/wp-content/uploads/2021/12/MACStats-Medicaid-and-CHIP-Data-Book-December-2021.pdf. The SSA lists Oklahoma as a 209(b) state on its website, though Oklahoma switched to using SSI criteria—while still requiring a separate application—a few years ago. See U.S. Social Security Administration, “Program Operations Manual System (POMS): SI 01715.020 List of State Medicaid Programs for the Aged, Blind and Disabled,” available at https://secure.ssa.gov/poms.nsf/lnx/0501715020 (last accessed September 2022); Brent Howard, “Update on SoonerCare/Medicaid changes for Oklahoma,” Brent S. Howard, Esq., September 10, 2015, available at http://www.swokestateplanner.com/2015/09/10/update-on-soonercaremedicaid-changes-for-oklahoma/.
  131. Colello and Morton, “Medicaid Eligibility: Older Adults and Individuals with Disabilities,” p. 13.
  132. Medicaid and CHIP Payment and Access Commission, “MACStats: Medicaid and CHIP Data Book,” pp. 103-105; MaryBeth Musumeci, Priya Chidambaram, and Molly O’Malley Watts, “Medicaid Financial Eligibility for Seniors and People with Disabilities: Findings from a 50- State Survey” (San Francisco: Kaiser Family Foundation, 2019), p. 24, available at https://www.kff.org/report-section/medicaid-financial-eligibility-for-seniors-and-people-with-disabilities-findings-from-a-50-state-survey-issue-brief/.
  133. Most disability beneficiaries receive aid from just one of the two programs, though the population of dual beneficiaries is hardly trivial. As of December 2021, 11.5 million disabled Americans ages 18–64 were receiving SSI, SSDI, or both. Among that population, 7.1 million (62 percent) received only SSDI, 3.3 million (28.6 percent) received only SSI, and 1.1 million (9.4 percent) received both SSI and SSDI. See U.S. Social Security Administration, “Fast Facts & Figures about Social Security, 2022: Cross-Program Beneficiaries, Disabled Beneficiaries Aged 18–64, December 2021,” available at https://www.ssa.gov/policy/docs/chartbooks/fast_facts/2022/fast_facts22.html#page34 (last accessed September 2022).
  134. National Low Income Housing Coalition, “The Shortage of Affordable, Available, and Accessible Rental Homes,” September 30, 2021, available at https://nlihc.org/resource/shortage-affordable-available-and-accessible-rental-homes.
  135. Ned Resnikoff, “Administrative Burdens,” Benioff Homelessness and Housing Initiative, November 1, 2021, available at https://homelessness.ucsf.edu/blog/administrative-burdens.
  136. Emily Hurstak and others, “Factors associated with cognitive impairment in a cohort of older homeless adults: Results from the HOPE HOME study,” Drug and Alcohol Dependence 178 (2017): 562–570, available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5568464/.
  137. Resnikoff, “Administrative Burdens.”
  138. Congressional Research Service, “Section 811 and Other HUD Housing Programs for Persons with Disabilities” (Washington: 2016), available at https://crsreports.congress.gov/product/pdf/rl/rl34728#:~:text=Section%20811%2C%20persons%20with%20disabilities%20lived%20together%20with,Section%20202%20Supportive%20Housing%20for%20the%20Elderly%20program; GovInfo, “Title 42—The Public Health and Welfare, § 8013: Supportive housing for persons with disabilities,” available at https://www.govinfo.gov/content/pkg/USCODE-2010-title42/pdf/USCODE-2010-title42-chap89-sec8013.pdf (last accessed October 2022).
  139. Congressional Research Service, “Section 811 and Other HUD Housing Programs for Persons with Disabilities.”
  140. Randal Pinkett and others, “HUD Section 811 Project Rental Assistance Program: Process Evaluation” (Washington: U.S. Department of Housing and Urban Development 2018), p. 40, available at https://www.huduser.gov/portal/sites/default/files/pdf/section-811-processeval-report.pdf.
  141. Ibid.
  142. Congressional Research Service, “Section 811 and Other HUD Housing Programs for Persons with Disabilities.”
  143. Pinkett and others, “HUD Section 811 Project Rental Assistance Program: Process Evaluation,” p. 40.
  144. U.S. Department of Housing and Urban Development, “Section 811 PRA Program Eligibility Requirements,” available at https://www.hudexchange.info/programs/811-pra/pra-program-eligibility-requirements/ (last accessed November 2022); U.S. Department of Housing and Urban Development, “Accessibility Requirements for Buildings,” available at https://www.hud.gov/program_offices/fair_housing_equal_opp/disabilities/accessibilityR (last accessed November 2022); Sonya Acosta and Brianna Guerrero, “Long Waitlists for Housing Vouchers Show Pressing Unmet Need for Assistance” (Washington: Center on Budget and Policy Priorities, 2021), available at https://www.cbpp.org/research/housing/long-waitlists-for-housing-vouchers-show-pressing-unmet-need-for-assistance.
  145. Laura M. Maruschak, Jennifer Bronson, and Mariel Alper, “Survey of Prison Inmates, 2016: Disabilities Reported by Prisoners” (Washington: U.S. Department of Justice, 2021), available at https://bjs.ojp.gov/content/pub/pdf/drpspi16st.pdf; California Council on Criminal Justice and Behavioral Health, “Reducing Homelessness for People with Behavioral Health Needs Leaving Prisons and Jails,” available at https://www.cdcr.ca.gov/ccjbh/reducing-homelessness-for-people-with-behavioral-health-needs-leaving-prisons-and-jails/ (last accessed October 2022).
  146. Affordable Housing Online, “What is the Section 811 Housing for Persons with Disabilities Program?”, available at https://affordablehousingonline.com/guide/section-811 (last accessed October 2022).
  147. Ibid.
  148. Jaboa Lake, Valerie Novack, and Mia Ives-Rublee, “Recognizing and Addressing Housing Insecurity for Disabled Renters,” Center for American Progress, May 27, 2021, available at https://www.americanprogress.org/article/recognizing-addressing-housing-insecurity-disabled-renters/.
  149. Beth Dillman, “Disabled Renters’ Housing Rights,” available at https://www.nolo.com/legal-encyclopedia/disabled-renters-housing-rights-30121.html.
  150. Mia Ives-Rublee and Christine Sloane, “Alleviating Food Insecurity in the Disabled Community: Lessons Learned From Community Solutions During the Pandemic” (Washington: Center for American Progress, 2021), available at https://www.americanprogress.org/article/alleviating-food-insecurity-in-the-disabled-community/.
  151. U.S. Department of Agriculture, “Stores Accepting SNAP Online,” available at https://www.fns.usda.gov/snap/online-purchasing-pilot (last accessed October 2022).
  152. Herd and Moynihan, “How Administrative Burdens Can Harm Health”; Leighton Ku, Erin Brantley, and Sydney Pryor, “SNAP Will Also Unwind,” Health Affairs, July 14, 2022, available at https://www.healthaffairs.org/do/10.1377/forefront.20220712.461768/.
  153. U.S. Department of Agriculture, “SNAP Special Rules for the Elderly or Disabled,” available at https://www.fns.usda.gov/snap/eligibility/elderly-disabled-special-rules (last accessed October 2022).
  154. Ibid.
  155. Congressional Research Service, “The Supplemental Nutrition Assistance Program (SNAP): Categorical Eligibility” (Washington: 2022), available at https://sgp.fas.org/crs/misc/R42054.pdf – :~:text=Categorical%20eligibility%20is%20a%20set%20of%20policies%20that,Income%20%28SSI%29%2C%20and%20state-financed%20General%20Assistance%20%28GA%29%20Programs.
  156. U.S. Department of Agriculture, “SNAP Recertification Toolkit” (Washington: 2018), available at https://fns-prod.azureedge.us/sites/default/files/media/file/SNAP Recertification Toolkit – 06-2018.pdf.
  157. Federal Student Aid, “Total and Permanent Disability Discharge,” available at https://studentaid.gov/manage-loans/forgiveness-cancellation/disability-discharge (last accessed October 2022).
  158. John Whitelaw and Bethany Lilly, “Delivering on Debt Relief: Proposals, Ideas, and Actions to Cancel Student Debt on Day One and Beyond” (Washington: Student Borrower Protection Center, 2020), available at https://protectborrowers.org/wp-content/uploads/2020/12/Delivering-on-Debt-Relief.pdf.
  159. Ibid.
  160. Ibid.
  161. U.S. Government Accountability Office, “Social Security Offsets: Improvements to Program Design Could Better Assist Older Student Loan Borrowers with Obtaining Permitted Relief” (Washington: 2016), available at https://www.gao.gov/assets/gao-17-45.pdf; U.S. Department of Education, “Education Department Releases Proposed Regulations to Expand and Improve Targeted Relief Programs,” Press release, July 2, 2022, available at https://www.ed.gov/news/press-releases/education-department-releases-proposed-regulations-expand-and-improve-targeted-relief-programs.
  162. U.S. Department of Education, “Education Department Announces Relief for Student Loan Borrowers with Total and Permanent Disabilities During the COVID-19 Emergency,” Press release, March 29, 2021, available at https://www.ed.gov/news/press-releases/education-department-announces-relief-student-loan-borrowers-total-and-permanent-disabilities-during-covid-19-emergency.
  163. U.S. Department of Education, “Institutional Eligibility Under the Higher Education Act of 1965, as Amended; Student Assistance General Provisions; Federal Perkins Loan Program; Federal Family Education Loan Program; and William D. Ford Federal Direct Loan Program,” Federal Register 87 (210) (2022): 65904–66072, available at https://www.federalregister.gov/documents/2022/11/01/2022-23447/institutional-eligibility-under-the-higher-education-act-of-1965-as-amended-student-assistance.
  164. Carolyn Fast, “New Rule Would Expand Student Debt Relief for Disabled Borrowers,” The Century Foundation, August 1, 2022, available at https://tcf.org/content/commentary/new-rule-would-expand-student-debt-relief-for-disabled-borrowers/.
  165. Bethany Lilly and Persis Yu, “Targeted Loan Relief Doesn’t Work,” Inside Higher Ed, June 9, 2022, available at https://www.insidehighered.com/views/2022/06/09/targeted-loan-relief-programs-dont-work-opinion.
  166. Stephen Brumbaugh, “Travel Patterns of American Adults with Disabilities” (Washington: U.S Department of Transportation, 2018), available at https://www.bts.gov/sites/bts.dot.gov/files/2022-01/travel-patterns-american-adults-disabilities-updated-01-03-22.pdf.
  167. Ibid.
  168. Federal Transit Administration, “Biden Administration Announces Bipartisan Infrastructure Law Funding to make Public Transportation Rail Stations Accessible for All,” Press release, July 26, 2022, available at https://www.transit.dot.gov/about/news/biden-administration-announces-bipartisan-infrastructure-law-funding-make-public (last accessed October 2022).
  169. Centers for Disease Control and Prevention, “Prevalence of Disability & Disability Types,” available at https://www.cdc.gov/ncbddd/disabilityandhealth/features/disability-prevalence-rural-urban.html (last accessed October 2022).
  170. Elena T. Remillard and others, “Transportation challenges for persons aging with mobility disability: Qualitative insights and policy implications,” Disability and Health Journal 15 (1) (2022): 101209­, available at https://reader.elsevier.com/reader/sd/pii/S1936657421001825?token=FDBD44952C9CE9F831C6FD87EBEB0BAB8BED4A89FCC8EC72FC0B41E47D7F4DB568A44F50F01DD44B3879498120B5988A&originRegion=us-east-1&originCreation=20220912210011.
  171. Washington Metropolitan Area Transit Authority, “Customer Guide to MetroAccess” (Washington: 2022), available at https://www.wmata.com/service/accessibility/metro-access/upload/MetroAccess-Customer-Guide-September-2022.pdf.
  172. ADA.gov, “Information and Technical Assistance on the Americans with Disabilities Act,” available at https://archive.ada.gov/ta-pubs-pg2.htm (last accessed October 2022).
  173. U.S. Department of Labor, “Accommodations,” available at https://www.dol.gov/agencies/odep/program-areas/employers/accommodations#:~:text=Under%20Title%20I%20of%20the%20Americans%20with%20Disabilities,things%20are%20usually%20done%20during%20the%20hiring%20process (last accessed October 2022).
  174. U.S. Bureau of Labor Statistics, “Economic News Release: Persons with a Disability: Barriers to Employment, Types of Assistance, and Other Labor-Related Issues,” Press release, March 30, 2022, available at https://www.bls.gov/news.release/dissup.nr0.htm?msclkid=dcef0bb2b9bb11ecb57867bd5bca51a5.
  175. Job Accommodation Network, “Sample Forms,” available at https://askjan.org/topics/Sample-Forms.cfm (last accessed October 2022).
  176. Job Accommodation Network, “Disclosing a Disability Before an Accommodation Is Needed,” available at https://askjan.org/articles/Disclosing-a-Disability-Before-an-Accommodation-is-Needed.cfm (last accessed October 2022).
  177. Job Accommodation Network, ”Dealing With Improper Requests for Medical Documentation From an Employer,” available at https://askjan.org/publications/consultants-corner/Dealing-with-Improper-Requests-for-Medical-Documentation-from-an-Employer.cfm (last accessed October 2022).
  178. Mia Ives-Rublee, Rose Khattar, and Lily Roberts, “Removing Obstacles for Disabled Workers Would Strengthen the U.S. Labor Market” (Washington: Center for American Progress, 2022), available at https://www.americanprogress.org/article/removing-obstacles-for-disabled-workers-would-strengthen-the-u-s-labor-market/.
  179. Herd and Moynihan, “How Administrative Burdens Make Government Less Effective and What to Do About It.”
  180. Autistic Self Advocacy Network, “Plain Language for Self-Advocates” (Washington: 2022), available at https://www.selfadvocacyinfo.org/wp-content/uploads/2022/04/Plain-Language-for-Self-Advocates.pdf.
  181. W3C: Web Accessibility Initiative, “W3C Accessibility Standards Overview,” available at https://www.w3.org/WAI/standards-guidelines/ (last accessed October 2022).
  182. Executive Office of the President, “Fact Sheet: Putting the Public First: Improving Customer Experience and Service Delivery for the American People,” Press release, December 13, 2021, available at https://www.whitehouse.gov/briefing-room/statements-releases/2021/12/13/fact-sheet-putting-the-public-first-improving-customer-experience-and-service-delivery-for-the-american-people/.
  183. Schweitzer, “How To Address The Administrative Burdens of Accessing the Safety Net.”
  184. U.S. Department of Housing and Urban Development, “Section 504: Frequently Asked Questions,” available at https://www.hud.gov/program_offices/fair_housing_equal_opp/disabilities/sect504faq#_General (last accessed November 2022).
  185. LaDonna Pavetti, “Work Requirements Don’t Cut Poverty, Evidence Shows” (Washington: Center on Budget and Policy Priorities, 2016), available at https://www.cbpp.org/research/poverty-and-inequality/work-requirements-dont-cut-poverty-evidence-shows.
  186. Bryce Covert, “Paperwork Keeps People Poor,” The Nation, November 29, 2021, available at https://www.thenation.com/article/economy/work-requirements/.
  187. Chris Sadler and Claire Park, “Better Data Sharing for Benefits Delivery,” New America, June 28, 2022, available at https://www.newamerica.org/oti/briefs/better-data-sharing-for-benefits-delivery/.
  188. Kathleen Romig, “Social Security Administration Needs Boost in Continuing Resolution to Avoid Customer Service Crisis,” Center on Budget and Policy Priorities, September 14, 2022, available at https://www.cbpp.org/blog/social-security-administration-needs-boost-in-continuing-resolution-to-avoid-customer-service; Bram Sable Smith and Rachana Pradhan, “A staffing crisis is causing a monthslong wait for Medicaid, and it could get worse,” NPR, April 4, 2022, available at https://www.npr.org/sections/health-shots/2022/04/04/1089753555/medicaid-labor-crisis; Lauren Trager, “Staffing shortages possibly to blame for ‘abhorrent’ food stamp call center wait times,” KMOV 4, February 25, 2022, available at https://www.kmov.com/2022/02/26/staffing-shortages-possibly-blame-abhorrent-food-stamp-call-center-wait-times/.
  189. The CAP Health Policy Team, “Medicare Extra for All: A Plan to Guarantee Universal Health Coverage in the United States” (Washington: Center for American Progress, 2018), available at https://www.americanprogress.org/article/medicare-extra-for-all/.
  190. Authors’ calculations based on data from U.S. Social Security Administration, “Annual Statistical Report on the Social Security Disability Insurance Program, 2021.”
  191. Gruber, “Statement of Theresa Gruber: Testimony Before the Senate Committee on Homeland Security and Governmental Affairs, Subcommittee on Regulatory Affairs and Federal Management,” Figure 1.
  192. Office of the Inspector General, “Compassionate And REsponsive Service Plan to Reduce Pending Hearings” (Washington: U.S. Social Security Administration, 2016), available at https://oig-files.ssa.gov/audits/full/A-05-16-50167.pdf; Kijakazi, “Social Security Administration General Statement.”
  193. Bethany K. Laurence, “Getting Your Disability Benefits Back Without Reapplying: Expedited Reinstatement,” Nolo, January 13, 2021, available at https://www.nolo.com/legal-encyclopedia/getting-your-disability-benefits-back-without-reapplying-expedited-reinstatement.html#:~:text=Even%20if%20your%20application%20for,Medicaid%20(for%20SSI%20recipients).
  194. Continuing medical disability reviews reduce federal spending by $8 for every $1 spent on the reviews. See U.S. Office of Management and Budget, “Analytical Perspectives: Budget of the U.S. Government, Fiscal Year 2017” (Washington: 2016), p. 128, available at https://www.govinfo.gov/content/pkg/BUDGET-2017-PER/pdf/BUDGET-2017-PER.pdf; Ruffing, “It’s Hard to Qualify for Disability Insurance.”
  195. SSI Savings Penalty Elimination Act, S. 4102, 117th Cong., 2nd sess. (April 28, 2022), available at https://www.congress.gov/bill/117th-congress/senate-bill/4102/text.
  196. The National Academy of Social Insurance has previously written: “Eliminating SSI’s asset limits altogether would further enable beneficiaries to save and plan for the future, while relieving the Social Security Administration (SSA) of a burdensome and complex policy to administer.” See Rebecca Vallas, “‘Building Back Better’ for Older and Disabled Americans Requires Bringing Supplemental Security Income (SSI) into the 21st Century” (Washington: National Academy of Social Insurance, 2021), available at https://www.nasi.org/wp-content/uploads/2021/07/SSI-Building-Back-Better-for-Older-and-Disabled-Americans-Fact-Sheet.pdf.
  197. As CAP has previously noted, asset tests “serve more as paperwork requirements that inevitably cut off benefits for some eligible participants because the paperwork is too confusing, time-consuming, or otherwise difficult to consistently complete.” See Schweitzer, “How To Address the Administrative Burdens of Accessing the Safety Net.”
  198. The Century Foundation and Data for Progress, “Voters Overwhelmingly Support Strengthening Supplemental Security Income (SSI)” (New York: 2021), available at https://www.filesforprogress.org/memos/dfp_tcf_ssi_may_2021.pdf.
  199. Center on Budget and Policy Priorities, “Policy Basics: Supplemental Security Income” (Washington: 2022), available at https://www.cbpp.org/research/social-security/supplemental-security-income.
  200. Authors’ calculations based on data from U.S. Bureau of Labor Statistics, “CPI Inflation Calculator,” available at https://www.bls.gov/data/inflation_calculator.htm (last accessed November 2022). Calculations compared January 1974 data—when the first SSI payments went out—to September 2022 data.
  201. Authors’ calculations based on data from U.S. Social Security Administration, “National Average Wage Index,” available at https://www.ssa.gov/oact/cola/AWI.html (last accessed October 2022).
  202. Anonymous SSDI and Medicare recipient from California, interview with authors via Zoom, June 23, 2022, on file with authors.

The positions of American Progress, and our policy experts, are independent, and the findings and conclusions presented are those of American Progress alone. A full list of supporters is available here. American Progress would like to acknowledge the many generous supporters who make our work possible.

Authors

Justin Schweitzer

Policy Analyst

Emily DiMatteo

Senior Policy Analyst, Disability Justice Initiative

Nick Buffie

Former Policy Analyst, Tax and Budget Policy

Mia Ives-Rublee

Director, Disability Justice Initiative

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