Why do people choose not to apply for disability benefits? This study in the Disability & Health Journal looks at decision-making among people with disabilities. It focuses on people who can no longer work full-time.
This plain language summary is part of a new series sharing highlights from the Disability and Health Journal.
Why was this study done?
Social safety net programs are an important support for vulnerable communities. However, many of these programs are still not being used by those that qualify for and may need them. Social Security Disability is one program in particular that has been underutilized. Over 20 million adults report having disabilities that affect their ability to work. However, only 11 million people are currently receiving disability benefits (SSI or SSDI). This study looked at how people make decisions about their benefits applications. It focuses on adults with self-reported work disabilities. This includes those who have either stopped working or reduced their hours.
How was this study done?
This study interviewed 39 work-disabled adults. It included people who have never applied for disability benefits. Researchers conducted interviews that were on average 26 minutes long. The interview questions were open-ended to start, so that participants answered freely. The researchers asked about two areas that might affect applicant decision-making. First, they asked about personal factors, including a person’s medical status or beliefs. Second, they asked about systemic factors, like fears of stigma or application requirements.
What did this study show?
People choose not to apply for disability benefits for many reasons. Major reasons people don’t apply include the high costs of completing an application. There is also a widespread belief that most applications are denied. Many in the group were new to navigating the healthcare system for their disability. Uncertainty about the medical system and length of time needed to get a diagnosis was also an issue. There was a common feeling that accepting benefits would harm their ideas of self. This information can inform future outreach to people eligible for disability benefits.
Here were some common barriers to completing Social Security disability applications:
- People expected their application would be denied. Many knew others who had negative experiences with the process. Some expected that most applications are simply denied without review.
- People anticipated a lot of time, energy, and cost involved in the process. This sentiment was felt across all racial backgrounds. Many expected the process to be emotionally exhausting. Information barriers were an issue. Some cited the burden of gathering the information required for an application. They couldn’t always determine if they met application requirements. Procrastination, limited self-control and “status quo bias” could be factors.
- There were common difficulties accessing a medical diagnosis, treatment, or care. Getting a diagnosis that documents a health condition can be difficult. People might also assume they’ll return to the workforce. In a health crisis, people can be too overwhelmed to apply for disability benefits. Some medical conditions and disabilities are hard to get care for. This can make it a challenge to access medical documentation too. Some people lacked access to a primary care doctor. There were also provider closures due to the COVID-19 pandemic. Lack of transportation to appointments and inability to afford care were also cited.
- Having disability benefits can impact a person’s self-worth. Applying for benefits was associated with dependency. Some respondents’ self-worth was tied to their work, health and financial independence. Having disability benefits felt like the loss of that worth. Cultural and political influences might make participants feel conflicted about applying for benefits. Stigma is a common experience for people with long-term work disabilities in the US. However, stigma was not a concern for participants. Moreso, people felt accepting disability benefits would harm their self-worth. This was more common in white respondents than other racial/ethnic groups. All respondents indicated difficulty with accepting a disability label, regardless of race. This internalized stigma has been documented with other recipients of public assistance programs. It may also represent the difficult of adapting to life with a new disability.
- It can be difficult to access information about disability benefits and eligibility. These can include language barriers, or lack of nearby Social Security offices. This limits access to application navigation resources. Minority groups are even more likely to view the costs of completing an application as a barrier.
- There was a concern that disability benefits would be too low to meet basic needs. For people receiving other benefits, people assumed new benefits might impact current benefits. Some didn’t feel urgency to access benefits given their financial situation.
Social program take-up is a common problem with government programs. This has been seen in various programs as well as with housing and unemployment benefits. There is also low participation in the Earned Income Tax Credit program. Racial minorities have a lower participation rate. Low uptake and enrollment from these groups is an equity issue. Participants had high levels of awareness about Social Security disability benefits. This did not appear to be a barrier to program uptake.
Strengths and Limitations
- Strengths
- This study provides more qualitative data than previous research. This provides insight into applicant decision-making.
- This study showed people are open to dialogue about their benefits decision-making. This indicates that more people might be open to apply for benefits if they are approached the right way.
- Participants were diverse, representing many different demographics.
- Limitations
- In this study it was not possible to confirm benefit eligibility for participants.
- It was also not possible to confirm who would have been awarded benefits had they applied. That would have required a lot of complex.
- Participants included in the study are estimates of who might seek benefits.
- This study does not differentiate between SSDI and SSI benefits applications.
- This sample includes a greater proportion of women. There may be other barriers experienced in the application process for men.
Future research could look at:
- how human psychology affects decision-making related to benefits.
- how resilience, coping styles and self-reliance affect participant decision-making
- differences in decision-making by racial/ethnic group.
- implementing experiments to address barriers to application completion.