Plain Language Executive Summary of “In the last year, it’s gotten a lot worse” A Qualitative Investigation of Barriers to Disability Benefits in 2025

Follow this link for the full report.

Background

In 2025, the Social Security Administration (SSA) changed a lot. The changes happened after Donald Trump was elected as President again. They happened after Trump created the Department of Government Efficiency (DOGE). Some of the biggest changes were:

• The firing of the most people ever at the SSA.
• Combining 10 regional offices into 4.
• Making more customer service available on the internet.
• Expanding Artificial Intelligence (AI)-based services.
• Changing rules very often. Specifically, rules about overpayment and walk-in services.

News and information about all of these changes have been confusing. Sometimes the information is different. Sometimes it’s incorrect. Especially about how it might affect people who get benefits under the SSA’s two big programs:

• Social Security Disability Insurance (SSDI) and
• Supplemental Security Income (SSI).

In this report, we show you what some of the effects of these changes are. Between July and September of 2025, we interviewed 52 people at 32 organizations. These people help other people get and keep their SSI or SSDI benefits. Together, the people we interviewed represent 8,000 other people who get these SSA benefits. We used reporting, records, and other research to give context to the information we found.

Findings

We found that Trump’s changes caused a lot of issues for people who want to get and keep benefits. As well as for the lawyers and specialists who represent and help people who get benefits. Sometimes people who receive SSA benefits are called “beneficiaries.”

We organized what we found into 7 themes that are all related. These themes show how access to benefits changed in 2025.

1. People compared their experiences with SSA in 2025 to before. They say it is worse and many have new problems they didn’t used to have.
2. Difficulty accessing benefits is a big problem. People have said it was like “getting stuck in a loop.” We have pointed out 5 big areas where people have said accessing benefits is harder:
   1. Changes to the phone system
   2. Walk-in policy changes in local offices
   3. People getting fired
   4. SSA taking longer to get thing done
   5. Increased overpayments
3. Very bad things that can happen when there are less people to help people on benefits. People’s health can get worse, or they can lose their home. Sometimes people even die while they wait for benefits. When someone loses benefits, they cannot access healthcare. They also lose access to money.
4. There are too many administrative barriers at SSA. This has made it very difficult for people. Especially people who have little use of technology or the internet. And those who have intellectual disabilities. Or, disabilities that affect the way they communicate. Additionally, it affects people who do not have secure access to housing.
5. There is less accountability at the SSA now. People who responded thought this was because of fewer places to go to get help. With less accountability, it is harder to solve problems people are having.
6. SSA staff are saying unexpected things. Sometimes, they say things that are the opposite of other things that were said. SSA staff are doing things differently from policy and rules.
7. The impacts on people and organizations that serve people who receive benefits. There is a lot of time being spent just to get basic information. There is less customer service which puts strain on the system and other organizations.

Recommendations

These recommendations come directly from advocates. They also come from the authors of the report.

1. SSA should hire more people. Automation cannot replace human capacity. SSA should make it easy to schedule appointments, with an option for urgent matters.
2. SSA should expand the right to use walk-in services at SSA offices. They should also explain the rules for walk-in services very clearly. People who can’t use phones or online systems need to be able to use walk-in services.
3. People should have more control when they are on the phone with SSA. Callers should be allowed to stay on hold instead of being rerouted.
4. Overpayments should not be penalized as much as they are right now. Sometimes SSA overpays beneficiaries more than they are supposed to get that month. When SSA overpays someone, the recipient is required to return extra funds. SSA does this by taking money out of future payments. The amount of money SSA takes away from future payments is called a “withholding rate.” Right now, the withholding rate for overpayments is 50%. Our report says that SSA should return the withholding rate for overpayments to 10%. This would make it easier for beneficiaries to pay their bills. SSA should give people notice before withholding their benefit payments.
5. SSA should make things happen faster. Especially processing applications. SSA applications Create a way to correct things that are obviously wrong before the appeals process.
6. SSA should make it easier for people to access information. They should not use customer service systems that are online-only. Authorized beneficiaries should be allowed to access their account information. There are ways to ensure beneficiaries can access this information securely.
7. SSA needs to provide other options for people who cannot use AI-based phone systems. For example, let people bypass them for menus or live people. Especially people with communication disabilities.
8. SSA should make it easier to escalate issues. Hiring communications staff can ensure timely responses.
9. Data privacy and benefit access need to be protected. Especially for immigrant and mixed status families. This includes:
   1. Avoiding unnecessary data sharing
   2. Preventing administrative burdens that discriminate
   3. Stopping the exclusion of representative payees based on immigration status
10. Listen to advocates and beneficiaries! Do this by doing ongoing communication, including regular meetings. Also, meeting with them about policy or procedure change before it happens. Especially things that affect customer service, benefit processing, or payment systems.

There should be ongoing public reporting of customer service interactions. Combine that with clear explanations and contextual information. Things like the average hold time or the amount of people that hung up the call before speaking to someone. This is how we can put the above recommendations in place.

Conclusion

SSA’s disability programs are built through complicated systems based on rules. Those systems depend on trust from the public and accountability to laws. We interviewed advocates that were very familiar with the system. These advocates described issues that have been happening for a long time. Issues like processing delays, not enough staff, and long wait times on the phone and in offices. But, the 2025 changes made those worse. The changes made them feel like knowing how the system works “under the hood” doesn’t matter.

These changes most affected people who are multiply marginalized. That means people who do not have homes, who live in rural areas, or who do not have internet access, for example. Increased reliance on digital systems often hurt the people who needed the most help. Less staff and inability to escalate issues made it difficult for advocates to step in when there were problems. This report only looks at represented clients. That is, people who are receiving SSI or SSDI who have people advocating on their behalf. Given all the problems we’ve shown, challenges for people who are unrepresented are likely even worse.

The harms documented in this report during 2025 did not need to happen. These harms occurred because the Trump administration made many policy choices. These choices will continue to hurt people if nothing changes.

At the same time, respondents also pointed to SSA’s capacity for change upon engagement with research and advocates, and to the strength of its remaining dedicated employees. The evidence in this report highlights the importance of reinvesting in the Social Security workforce, restoring and enhancing access to staff in person and on the phone, rebuilding systems of accountability, and designing technology that complements rather than replaces staff interaction.

Follow this link for the full report.