How Dehumanizing Administrative Burdens Harm Disabled People

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.

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

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

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

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.

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

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 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

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

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

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.

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

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

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

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

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

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

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.

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
  

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.