As prepared for delivery.

“Good morning. Welcome to today’s hearing on Social Security’s disability claims backlog.

“For the first time in history more than one million people are waiting on the Social Security Administration to process their initial disability claim.

“On average claims are taking 220 days to be decided. That’s more than 100 days longer than in 2019, and more than 150 days longer than the Social Security Administration itself defines as its minimum level of performance.

“This has real-world consequences for individuals who are unable to work and waiting for a disability decision.

“To help illustrate what the SSA’s claims process looks like from a claimant’s perspective, I’d like to submit for the record a statement provided to us by a beneficiary who waited more than a year for a decision that should’ve taken months if not weeks.

“Unfortunately, due to the severity of her condition she is unable to testify before us today, but I think it’s important that everyone here in this room and everyone watching from home hear what she has to say.

“So rather than read her words myself, I’d like to play a short recording she provided to us in her own words and in her own voice:

‘It was a semi-typical day. I was leaning on the countertop in our hall bathroom waiting for my 2-year-old to finish going to the toilet. My husband was in the bedroom sleeping off the previous night’s third shift from his job but had his phone on full blast in case I needed help. Suddenly the muscles around my ribs cramped and I could barely get air in. I pulled out my cell phone and called my husband and said one quiet word, “Help”. As I went to my knees, I thought to myself, “I’m going to die on the bathroom floor in front of my 2-year-old.”  At that moment, the Social Security Administration had denied my claim for disability, stating that I was capable of work. If my husband hadn’t brought my rescue medication, I would have died that day.

‘Stiff Person Syndrome is an exceptionally rare (literally one in a million) permanent and progressive autoimmune neurological condition that the primary symptom is severe muscle cramps and spasticity. The spasms in me have torn multiple ligaments, broken multiple ribs, given me multiple attacks where I cannot breathe, and have left me screaming in agony more times than I can attempt to count. It also affects my central nervous system causing things like seizures and vision problems.

‘I do my best to complete something productive each day and be a member of my small family, but most of my time is spent asleep, either because of sheer exhaustion or the many medications I have to take each day. The two primary causes of death from Stiff Person Syndrome are spontaneous apneic episodes, and suicide. Let me repeat that. I am most likely to die from suffocation or suicide.

‘It took me weeks to complete the Social Security application, both because of the breadth of information required as well as system errors that would cause entire pages to empty of data. I received many unclear letters in the mail. Each time this occurred, I had to call up to confirm that my application hadn’t been lost and that I was still in the queue to be deemed disabled.

‘Stiff Person Syndrome is on the compassionate allowance list. These are supposed to be the cases where the illness is so severe that there doesn’t need to be a wide assessment of validity of the disability. However, my case was not treated this way.  My case was denied.

‘We were living on savings and a very small private disability insurance payment, each month we were calculating how much longer we had to live before the money ran out. I emptied my 401k, we had to pay bills late. We had to delay some treatments for my autistic son.

‘Once my case was finally reassessed, my disability claim was approved and we received back pay, but my lawyer wasn’t paid and now I have to figure out how to address that issue. I am still awaiting my first monthly payment, but it has taken fifteen months.

‘This process can be made better for both employees of the Social Security Administration and claimants by simplifying it.’

“Unfortunately, her experience navigating the claims process is far too common.

“While the SSA claims that it is working to address the backlog, its policy and resource priorities say otherwise.

“From spending more than $100 million to fund outreach efforts aimed at increasing initial disability claims despite initial disability claims steadily declining on their own since 2010, to sitting on solutions that the agency has invested years and hundreds of millions of dollars in, the SSA has caught claimants in a crisis of its own making.

“Let me put this in plain English, the SSA is unable to keep up with the claims it has but is spending hundreds of millions of dollars to get more claims, dollars that should instead be going to provide claimants with faster decisions.

“Meanwhile, the SSA is sitting on solutions that would modernize and streamline the claims process.

“Over the past 12 years, the SSA has invested more than $300 million to obtain up-to-date occupational data to determine whether a claimant can work in a job in today’s economy. Although the SSA has acknowledged that this data is more useful and accurate, they continue to rely on occupational data that is more than 30 years out of date.

“These are just a couple examples of how the SSA is making life harder for claimants and making more work for itself, but there are many more that we’ll hear today. Clearly the SSA needs to do better, and I welcome the opportunity to discuss what that looks like with our witnesses today.

“I thank our witnesses for being here and I look forward to hearing your testimony.”