Breaking the Bottlenecks: Information, Access, and the Fight for Time ACRD 2026 Annual Conference Keynote: Kissimmee, Florida

 

Good afternoon, everyone. Welcome to Orlando and the ACRD annual conference!

It’s a pleasure to be here with you, and even better to see folks in person. We spend so much time on calls, emails, on screens, and helping others, that we don’t always get the chance to step back, shake hands, connect. You matter. You’re doing the hard work. This conference is your opportunity to lean in and connect with “birds of a feather”, other people doing the same work across this great country of ours. So, I am looking forward to the conversations this week. The ones in the hallway. The ones over coffee. The ones where someone says, “Are you seeing this too?” And the answer is usually, “Yes. Every day.” Now I will admit, when I saw the conference was in the Orlando area, I thought to myself, this might be the only conference where people flew in thinking they were going to Disney, and instead got a deep dive on disability policy, medical records, and administrative law. Not quite Space Mountain. But if we are being honest, what you all do every day is a different kind of ride. It’s high stakes for those we serve. It can be unpredictable. And there no fast pass. Unlike Disney, the people you serve cannot afford to wait in line. All too often, people die while waiting for a decision. As a country we can and should do better. No one gets rich from Disability. Not the attorneys, not the individuals. Your work prevents catastrophe. So, thank you for what you do. Thank you for your compassion. Thank you for being there when individuals are at their lowest.

I had the privilege of serving as Acting Commissioner of the Social Security Administration. I can tell you, there is nothing abstract about the system when you are sitting in that seat. Every number represents a person. Every delay shows up somewhere real. In a home. In a bank account. In a moment where someone is trying to hold it together. I remember visiting field offices in Minnesota and Wisconsin quietly, without press, just to see the work as it actually happens. I remember a young couple, two women just married, visiting the office for a name change. There was a young couple on SSI with a new baby. And then the single dad, with the 7-year-old son that has Downs Syndrome. You would see staff juggling cases, phones ringing, people waiting, systems moving slower than anyone wanted them to. And what struck me most was this. Compassion, Commitment, Service, Justice. The people inside SSA care deeply. They are working inside a system that is complex, constrained, and often outdated, but they show up every day trying to do right by the public. Over the past year, there has been a lot of noise about where the system is headed. Predictions that it would falter, that it could not hold, that things would break in ways that could not be recovered. That has not happened. The Social Security Administration has held. And that matters.

Commissioner Frank Bisignano is being consistent in his approach. He is hiring more than 700 new employees this year with a clear focus on one thing: service. Not service plus something else. Not service as a tradeoff. Service, period- across all three channels: field Office, National 800 Number and Digital.

Bisignano and President Trump are aligned on the need for measurable improvement. That starts with people. For too long, there has been an assumption that the agency could continue to rely on 40-plus-year veterans to hold the system together through heroic effort. That is not a strategy. It is not sustainable.

This hiring push is about reinforcing critical areas and bringing in new talent where it is needed most. If the goal is better service to the public, then investing in the workforce is not optional. It is the foundation.

Bisignano has been clear that fighting fraud and improving accuracy are part of service, not in competition with it. Stewardship of the trust funds and service to the public are not mutually exclusive. They rise or fall together.

His hands-on approach is already making a difference. Working closely with the Social Security Administration's Office of Inspector General, efforts are underway to dismantle fraud rings that have been draining millions of dollars through identity theft. That is not abstract. That is real money taken from the system and real harm done to real people.

This is not just about protecting the trust. It is about stopping the cycle that plays out every day in field offices across the country. People walk in, frustrated and scared, asking a simple question: where is my money. When fraud is prevented, those moments happen less often. When accuracy improves, trust is restored.

A few years ago, I witnessed firsthand the burden that fraud places on everyday Americans.

When we reopened Social Security field offices after COVID, I volunteered to spend a month on the front line.

I had been in leadership long enough to know how easy it is to start seeing the world through reports, metrics, and briefings. Everything looks clean at that level. Trends, averages, dashboards. But the public does not experience government as an average. They experience it one moment at a time, usually when something has gone wrong.

I wanted to see that again. I wanted to stand at the front door, look people in the eye, and understand what it felt like to walk in.

What I found were three kinds of cases that stayed with me.

The first was fraud.

A woman came in one morning holding her mail like it was evidence. She had it clutched to her chest, folded and refolded, as if letting go of it might cause something worse to happen. She was shaking. Not loud, not angry. The kind of quiet fear you recognize immediately. The kind that tells you this is not a person who deals with crisis often.

She told us her Social Security payment never arrived.

That sentence sounds simple. It is not.

That check was how she paid her rent. It was how she bought groceries. It was how she kept the lights on. There was no backup plan sitting behind it. No cushion. No second income.

We sat her down and pulled up her record. It didn’t take long to see what had happened. Someone had accessed her information, changed her direct deposit details, and redirected the payment.

Just like that, the money was gone.

You could see the moment it landed on her. Not just that the payment was missing, but that someone had reached into her life and taken something she depended on to survive. It wasn’t just financial. It was personal.

Now here’s what most people don’t realize.

In that situation, the system can work.

We verified her identity. We corrected the banking information. We started the process of recovering and reissuing the funds. It takes effort. It takes time. But there is a defined path.

She didn’t walk out relieved. That’s not how it works. But she walked out with something she didn’t have when she came in.

A path forward.

Later that same week, a different man came in.

You could feel him before you even spoke to him. He was pacing. His hands were tight. His voice was already raised before he reached the counter.

His bank account had been drained.

Everything.

He had woken up, checked his balance, and it was gone. Not reduced. Not compromised. Gone.

He came to us because, in his mind, this is where identity lives. This is where it starts. This is where it should be fixed.

He expected the same outcome the woman had. That we would pull up his record, identify the problem, and make it right.

So we sat down and started walking through it.

His Social Security record was intact.  Nothing in our system had been altered.

The theft had happened somewhere else. His identity had been compromised in a broader way. His bank account had been accessed and emptied.

And that is where the conversation changes.

We had to tell him the truth.

We do not issue new Social Security numbers in most identity theft cases. We do not restore funds stolen from private bank accounts. That authority sits elsewhere. We pointed him to the Federal Trade Commission. We told him to contact the credit bureaus. File reports. Begin the process.

And you could see it happen.

Anger gave way to confusion. Confusion gave way to something heavier.

He looked at us like we were the front door to a house that had no one inside.

Because from his perspective, this was the place that owned the problem. This was the place that should help him fix it.

He didn’t walk out with a path forward.

He walked out with a list.

Same building. Same front counter. Same expectation walking in the door.

In one case, the system works. In the other, it fragments.

The second kind of case was loss.

People who had just lost a spouse would come in, often within days. Sometimes still wearing the clothes from the funeral. Sometimes holding paperwork they did not fully understand, but knew they had to bring.

They were grieving, but they were also trying to solve an immediate problem. How do I pay the bills next month? What income remains? What do I do now?

We would sit with them and walk through survivor benefits, eligibility, and timelines. We would explain what changes and what stays the same.

But the truth is, in those moments, they are not hearing everything you say.

They are listening for one thing.

Am I going to be okay?

Policy matters. Accuracy matters. But presence matters more. The tone of your voice. The patience in your explanation. The willingness to slow down and meet them where they are.

Because you are not just processing a claim.

You are helping someone take their first step into a life they did not plan for.

And then there were the dire need cases.

The ones that cut through everything.

One day, a man pulled up and parked right in front of the office. Illegally parked. Late 1990s blue Ford F-150. It caught my eye because it was in good shape. Clean. Maintained. The kind of truck that tells you the person who owns it takes pride in what they do.

He came through the door fast.

Before I could even greet him, he yelled, “I’m going to die and you cut off my Social Security.”

That kind of statement stops you cold.

I stepped forward and said, “Come with me. Let’s sit down and talk about what happened.”

We sat down together, and the story came out.

He had just come from his doctor. His cancer was back. Not treatable. No more options. A month, maybe two.

He had spent his entire life working with his hands. Hard labor. The kind of work where your identity is tied to your ability to produce, to provide, to contribute.

When he first got sick in his late fifties, it was devastating. The cancer had spread quietly. By the time it was discovered, it was already deep in his body. Bones. Lungs. Everywhere.

He fought it. Chemo. Radiation. Years of pain. His family convinced him to apply for disability. He resisted at first. That’s not who he saw himself as. But eventually he did.

And because his condition was so severe, he qualified quickly.

Then something remarkable happened.

He went into remission.

Not cured, but given a chance.

And he did what made sense to him. He went back to work. Not in the same way as before, but enough to feel like himself again. That winter, he put a shovel in the back of his truck and started clearing driveways.

A little extra money. A better Christmas for his family. A sense of dignity. A return to identity.

And he did the right thing.

He reported his income.

So we did what the system told us to do.

We stopped his benefits.

Then came the doctor’s visit. The news. The timeline.

And the first place he came was not home.

Not to his family.

He came to us.

Because in his mind, this was unfinished business. Something that needed to be made right before he could let go.

We reviewed his case. We understood what had happened. And we acted. That day, we reinstated his benefits and issued a payment.

It was the compassionate thing to do.

But that is not the part that stays with me.

What stays with me is this.

Jon did everything right.

He worked hard. He fought his illness. He followed the rules. He reported his income honestly.

And still, at the end of his life, he walked into a government office angry and afraid that he had been left behind.

So here is the question we should be asking.

How do we design a system where a man like Jon never has to walk through that door in the first place?

Because the public does not experience government as agencies.

They experience it as responsibility.

They come to the place they believe owns the problem.

And right now, too often, we meet them at the counter instead of before they ever need to get there.

A better system would not be built around reaction. It would be built around anticipation.

It would detect fraud before a payment is ever diverted. Changes to bank information would trigger real-time verification. Patterns of suspicious activity would be flagged and stopped upstream, not discovered after the money is gone. And when fraud does occur, the burden would not fall on the victim to navigate a maze of agencies. There would be a coordinated identity response, where government acts as a single system, not a collection of disconnected parts.

A better system would treat identity as something that is actively protected, not passively issued.

It would also rethink the relationship between work and disability.

Right now, the system draws hard lines. Earn above a threshold, and benefits stop. That may make sense on paper. It does not make sense in a human life.

Recovery is not linear. Illness does not follow policy timelines. People try to come back. They test their limits. They have good months and bad months.

A better system would move with them.

Earnings would be tracked in near real time. Benefits would adjust gradually, not terminate abruptly. There would be a glide path, not a cliff. Work would be encouraged as part of recovery, not treated as a risk to eligibility.

So when someone like Jon picks up a shovel, the system supports that decision instead of punishing it.

A better system would recognize moments of crisis without requiring someone to declare them at a counter.

A terminal diagnosis. A relapse. The death of a spouse.

These are not edge cases. They are predictable life events. The system should be designed to respond to them with urgency built in. Not dependent on who happens to be sitting behind the desk that day, or whether someone knows to come in and ask.

And a better system would be designed around a simple idea.

The most important thing we deliver is not a payment.

It is trust.

Trust that if you do the right thing, the system will not fail you.

Trust that when something goes wrong, you will not be handed off and left to figure it out alone.

Trust that in the hardest moments of your life, your government sees you, understands the situation, and responds in a way that reflects both competence and compassion.

That is the standard.

And until we design for that, we will keep meeting people at the counter, on the worst day of their lives, trying to fix what should have never broken in the first place.

Service is not just speed. It is getting it right.

This matters for the millions of Americans who depend on SSA. It matters for all of the Advocates, Councilors and Representatives doing this work. And it reflects the reality that SSA is an institution with deep experience, dedicated people, and a mission on a path that transcends any one moment. But stability is not the same as success. Holding together is not the same as moving forward. And the people you serve are not asking for stability. They are asking for speed. For clarity. For access. For outcomes. Today I want to talk about something simple, but urgent. Time. Not government time. Not processing time. Human time. The time a disabled individual spends waiting for a decision. Waiting for a medical record. Waiting for a payment. Waiting for care. Waiting for stability. Because in this system, delay is not neutral. Delay is harm. The system is not just complex. It is fragmented. From the moment someone becomes disabled, they enter a maze. They must prove their condition. They must gather evidence. They must navigate healthcare providers, insurance systems, and federal programs that do not speak to each other. They must tell their story again. And again. And again. And at every step, there is friction. Medical records that are locked behind portals, paywalls, or outdated processes. Providers who do not respond in time. Systems that still rely on fax machines and mail. Agencies that hold critical data, but cannot or will not share it in ways that matter. We have a name for this. Information blocking. It is lived. It is real. And it slows everything down.

Recently, I had the opportunity to visit with Angela

She had been in treatment for years. Multiple providers. Specialists. Hospital visits. The kind of medical history that tells a very clear story, if you can actually see it.

She did what we ask people to do.

She worked with her representative. She signed the releases. She followed the instructions. She believed the records had been gathered and submitted.

And then she waited.

Weeks turned into months. Nothing. No decision. No clear update. Just waiting.

And then she learned something that should never happen in a system like this.

The records never made it. Not all of them. Not enough of them.

Some were never sent. Some were never received. Some were sitting somewhere in between. No one could say exactly where the breakdown happened.

It became her responsibility to figure things out. Her burden.

Now think about what that means for Angela.

From her perspective, everything was done. But inside the system, the case was incomplete.

So the clock did not just pause. It reset.

She had to go back. Re-contact providers. Re-request records. Re-live the process she thought was behind her.

More time. More stress. More uncertainty.

Not because someone said no. But because the system is broken.

I know. I am preaching to the choir. In my experience, every State, every Congressional District has a story. You represent the Disabled, and have heard these stories again and again, year after year.  How many cases, how many people, have come to you denied at the DDS because of incomplete evidence?

Why, information blocking.

We like to think that the development of evidence is a journey shared. That could not be farther from the truth. SSA’s Inspector reported just a few years ago that SSA only captured 11% of medical evidence electronically. The rest were faxed or mailed in.  Today, I’d put it closer to 25%. Better, but still nothing to celebrate. When I was going to school, a 25 out of 100 was an F. We need to help SSA do better, to eliminate the blockers.

SSA experiences blocking, so do we, and so do those we represent. All too frequently, Individuals trying to collect their own information experience information blocking when accessing their own patient records.

Including:

•        Restrictive and unfair contractual limitations on the use and exchange of medical information;

•        Excessive fees charged to access records

•        Bottlenecks caused by technical or non-standard methods of implementing EHRs and other health IT that block the access, exchange, or use of medical information.

The 21st Century Cures Act was supposed to fix this. It was a landmark bipartisan law, passed in December 2016, designed to accelerate innovation and, importantly, stop information blocking in health care. It gave the government real tools, including penalties, to go after bad actors.

This year, at the 2026 ASTP Annual Meeting, the Trump Administration’s Office of the National Coordinator for Health Information Technology committed to finally enforcing those provisions. I was there. I listened as Cassie Weaver from HHS laid out the Administration’s intent to move forward with Civil Monetary Penalties. Up to a million dollars per instance of proven information blocking. HHS OIG attorneys made it clear they are ready to act.

It sounds like a turning point. But there are reasons to be cautious.

HHS already leans heavily on the Office of Inspector General to carry a wide range of investigative responsibilities. Enforcement only works if you have the people to do it. I have not seen evidence that Congress has provided additional funding to hire more OIG investigators. I have not seen an Executive Order or an OMB directive that signals a whole-of-government push behind this effort.

And then there is the question of scale. A million dollar fine sounds significant, but for billion dollar companies, it is often just the cost of doing business. Without sustained enforcement and meaningful consequences, these penalties risk becoming little more than a headline and a temporary public relations problem.

So let’s be clear. We are not just here to describe the problem. We are here to move it. Our work is not just about navigating the system as it exists. It is about shaping the system into what it should be. Advocacy. That is why I am calling on this community to stand up together. Our task this year is a call to action. Together, we will build a State of Compassion Playbook and carry it forward with an engagement that brings evidence, urgency, and action to the stakeholders who shape this system. Practical, repeatable, and credible. report our Playbook will document reality, quantify delay, and define a path forward. It is a ground-level assessment of how the system is actually working for the people inside it.

It answers one core question: how long does it take, how hard is it, where does it break, and where do we go from here. At its core, the system rises or falls on information. Proper evaluation requires evidence, and that evidence must be complete, timely, and readable. Garbage in equals garbage out. When records are delayed, incomplete, or inconsistent, every downstream decision suffers, from the first intake to final adjudication.

It all starts with information and partnership. Public private partnership is not optional, it is the foundation of a balanced and functioning system. The government, led by the Social Security Administration, defines what evidence is required and how it is judged. The private sector holds the data, builds the tools, and moves the information. Neither can succeed alone, and forcing either side to carry the full burden has already proven to fail.

Together, we propose a practical playbook. The public role is to clearly define what good evidence looks like and to accept structured submissions that meet that standard. That means aligning policy with modern data practices and reinforcing expectations already embedded in laws like the 21st Century Cures Act. Government does not need to build the marketplace, but it must validate outputs, provide clarity on requirements, and ensure that participation improves outcomes rather than introducing new risk.

When agencies signal that structured, timely, and complete evidence will be recognized and rewarded in the adjudication process, behavior across the system begins to change. Providers respond faster when expectations are clear and effort is reduced. Representatives submit better cases when requirements are transparent. The system shifts from chasing paper to evaluating facts. That is where speed, fairness, and trust begin to align, and where real modernization finally takes hold.

This foundation leads us to a practical path forward. If we are serious about reducing delay, improving accuracy, and restoring trust, we cannot tackle everything at once. We start where the system breaks most often, at the point where evidence is requested, gathered, and evaluated. From there, we expand outward to support the individual navigating the process and, ultimately, to connect capability with opportunity.

Together, we will propose a structured approach that begins with fixing how evidence moves through the system, then strengthens how claimants access support, and finally builds pathways for meaningful work and engagement.

An Evidence & Records Marketplace focuses on the single biggest operational bottleneck in disability adjudication: obtaining usable medical evidence. Today, records are requested through a patchwork of faxes, portals, mailed forms, and manual follow-up. Even after years of policy pressure under the 21st Century Cures Act, most records still arrive as unstructured documents that require human review. The result is delay, cost, and inconsistency, with adjudicators spending time interpreting incomplete or poorly formatted information instead of making decisions.

In this model, the primary users are representatives, providers, and adjudicators, with the claimant at the center. A request for records is initiated once, through a structured workflow that identifies the exact evidence needed for a given condition. Providers receive clear, standardized requests and submit information in a guided format that reduces ambiguity. Instead of sending a stack of notes, they respond to specific prompts that align with how disability determinations are made. The output is not just a document, but a structured evidence package that can be consumed quickly.

Incentives are the core design challenge. Providers do not respond quickly today because the process is burdensome and reimbursement is inconsistent. A functioning marketplace must align effort with reward. That means fast payment for completed submissions, reduced administrative burden through templates and integration, and clear expectations about turnaround time. Networks like the eHealth Exchange demonstrate connectivity, but they do not solve usability or incentives. This marketplace closes that gap by making participation both easier and more predictable.

For adjudicators and agencies, including the Social Security Administration, the value is immediate. Evidence arrives more complete, more consistent, and faster. The system can flag missing elements before a case stalls, and it creates a verifiable audit trail that supports oversight and fraud detection. Over time, this becomes infrastructure, not a feature. It shifts the process from chasing records to evaluating evidence, which is where the system should have been all along.

A claimant support marketplace is built around a simple reality: people entering the disability system are often overwhelmed, sick, and unsure where to turn. They are asked to navigate legal, medical, and administrative processes at the same time, often while their income has already stopped. Today, the experience is fragmented. A person might find an attorney through word of mouth, a doctor through insurance constraints, and benefits guidance through online searches of uneven quality. The result is delay, confusion, and avoidable mistakes that ripple through the entire adjudication process.

In this model, the primary user is the claimant or their family member, supported by representatives. The platform guides them through a structured intake that identifies their condition, work history, and immediate needs. Based on that intake, the system surfaces vetted attorneys, medical providers familiar with disability documentation, and support services such as transportation or case management. The emphasis is not on listing options, but on sequencing decisions so the claimant knows what to do first, second, and third. The output is not just a referral, but a coordinated path forward.

Trust is the make-or-break factor. Unlike a typical marketplace, this one must signal credibility at every step. That means verified participants, transparent outcomes where possible, and clear expectations about timelines and responsibilities. Attorneys must demonstrate experience with specific types of claims. Medical providers must show responsiveness to record requests. The platform becomes a place where performance matters and is visible, not a static directory that rewards whoever pays for placement.

The system also needs to acknowledge its limits. It does not replace the Social Security Administration or adjudicate claims. It reduces friction before and around the system. If done right, fewer people walk into a field office in crisis, and more arrive prepared with the right representation and documentation. The value is measured in fewer errors, faster filings, and a more human starting point for a process that is often anything but.

A work and capability marketplace starts from a different premise: disability does not mean inability, but the current system often fails to match what people can do with opportunities that fit their circumstances. Many individuals with disabilities want to work, but face barriers related to flexibility, accommodations, and employer uncertainty. At the same time, employers struggle to understand how to engage this workforce without taking on perceived risk. The result is underutilized talent and missed economic participation.

In this model, the primary users are individuals with disabilities and employers willing to design roles around capability. The platform focuses on what a person can do, not what they cannot. It captures skills, limitations, and preferred work conditions, then matches them to roles that are flexible in structure and expectation. Employers are guided in how to define work in a way that accommodates variability, whether that means part-time schedules, task-based assignments, or remote participation. The output is a match that is realistic, not aspirational.

Credibility and support are essential on both sides. Workers need assurance that opportunities are legitimate and compatible with their benefits and health conditions. Employers need clarity on compliance, accommodations, and performance expectations. The platform can provide guardrails, including education on how work interacts with disability benefits and how to structure roles responsibly. It becomes a translator between two groups that often misunderstand each other.

This space is more crowded and less forgiving than the evidence marketplace. Differentiation comes from integration with the broader disability ecosystem, including alignment with programs administered by the Social Security Administration. If the platform can clearly show how work impacts benefits, reduce employer friction, and produce successful matches, it creates real value. If not, it risks becoming another job board that does not address the underlying constraints that keep people out of the workforce.

A State of Compassion Playbook is not a policy paper. It is a clear-eyed look at how this system actually works for the people inside it. It maps the journey. It identifies where we see things break.  It measures how long each step takes. It shows how much burden is placed on the individual. It tracks how information moves, or does not move, across the system. It grounds all of that in real cases.

And then it does something most advocates do not.

It tells the individuals who can fix it exactly what needs to change and who needs to act.

One of the funny things about being Commissioner, is you quickly learn that everyone has a problem. I think that’s generally true about leadership, everyone brings you their woes.   I’m sure you’ve felt that as well. However, what really got me excited was when those folks that identified an issue brought with them a solution.

We can’t just complain. It’s time to do more than diagnose. We need to be thoughtful and provide options. It’s time to recommend removing, replacing or writing the laws, regulatory, and sub-regulatory policy we want to see enacted.  It’s time to be bold.

Then, we can carry that ‘water’, our message forward. Engaging stakeholders across the system including Congress, the White House, OMB, and agencies within the ecosystem like SSA, HUD, HHS, CMS, and USDA. Because this is not a single-agency problem. It is a system problem. And it requires a wholistic response. Compassion is not measured by intent. It is measured by time and outcome. How long someone waits. How hard they have to push. How many barriers they have to overcome. You are already doing the work. Now it is time to organize it. Because at the end of the day, this is what it comes down to.

People. And people cannot wait.

Thank you