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Why the US Disability System Is Failing with Spencer Bishins

Spencer Bishins is a lawyer who worked at the Social Security Administration Appeals Council for almost four years, reviewing thousands of disability decisions for compliance with SSA’s complex rules and procedures. He then worked at the hearing level for seven years, where he drafted almost 2,000 decisions for SSA Administrative Law Judges.

After working for SSA for more than 10 years, he wanted to help demystify the complicated disability system.  His first book, Social Security Disability Revealed: Why it’s so hard to access benefits and what you can do about it, explores the obstacles that disability claimants face as they try to access benefits.

We’re discussing the nitty gritty of how the SSA is supposed to work, why it currently doesn’t do a great job in supporting disabled people in the United States, and what we can do to encourage a better system to take its place.

Want to listen? This post is based off of Episode 62 of the Neurodiverging Podcast! Listen on Apple Podcasts Google Podcasts | Spotify | Youtube


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Show Notes:


Guest Bio:

spencer bishinsSpencer Bishins has a master’s degree from the London School of Economics, and a law degree from Florida State University. After law school, he worked in the private sector for two years prior to joining the Social Security Administration (SSA) in 2010. He worked at the Appeals Council for almost four years, reviewing thousands of disability decisions for compliance with SSA’s complex rules and procedures. He then worked at the hearing level for seven years, where he drafted almost 2,000 decisions for SSA Administrative Law Judges.

After working for SSA for more than 10 years, he wanted to help demystify the complicated disability system.  His first book, Social Security Disability Revealed: Why it’s so hard to access benefits and what you can do about it, explores the obstacles that disability claimants face as they try to access benefits.

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Transcript of Episode 62: Why the US Disability System is Failing with Spencer Bishins

DANIELLE: Hello, my friends and welcome back to the Neurodiverging podcast! My name is Danielle Sullivan, I’m an autistic coach who works with clients with all kinds of neurodiversity and I’m your host. I’m glad you’re back with us today. Today we are very excited to be talking to Spencer Bishins, who is a lawyer who worked at the Social Security Administration Appeals Counsel for almost four years, reviewing thousands of disability decisions for compliance with SSA’s complex rules and procedures. 

He then worked at the hearing level for seven years where he drafted almost 2,000 decisions for SSA administrative law judges. After doing this for about 10 years he wanted to help demystify the complicated disability system in the United States. His first book, Social Security Disability Revealed, explores the obstacles that disability claimants face as they try to access benefits. 

So today we’re discussing the nitty-gritty of how the SSA is supposed to work, why it currently doesn’t do a great job in supporting disabled people in the United States, and what we can do on the ground level as people who live here to encourage a better system to take its place.

Before we dive into that I just want to give a big shoutout to my Patrons over at patreon.com/neurodiverging. They support this community, this podcast, by donating every month. We could not do it without you, thank you so much. 

If you would like to become a Patron, please head over to patreon.com/neurodiverging and check it out. You can also find blog articles, transcripts, upcoming events, and lots of other stuff over at our website at neurodiverging.com. Now, let’s get into this conversation with Spencer.

Welcome to the podcast, Spencer! I’m glad you’re here today. How are you doing?

SPENCER: I’m good, thanks for having me.

DANIELLE: Thanks for being here! So I know you are a lawyer, you worked in the Social Security Administration for a long time. Can you tell us a little bit about your background and then I want to talk about your book. 

What are SSA benefits?

SPENCER: Yeah, sure. So I started with Social Security in 2010 and I started at the Appeals Council where I was reviewing decisions that had already been written, either awarding or denying people Social Security Disability benefits. And I did that for about four years, and those actually go pretty quick because they’re already written, so I actually reviewed a few thousand cases during that four-year period. 

And then I transferred to the hearing level and I worked there for seven years, and in that position, I was actually writing the decisions and during that seven years, I wrote almost 2,000 disability decisions. Some favorable, many unfavorable, some in between granting and denying people Social Security Disability benefits.

So during my almost 11 years in Social Security, I’ve seen every medical impairment you could possibly think of, every accommodation of impairment. I’ve seen large medical records, small ones, well-developed, poorly developed. I’ve seen every possible kind of medical opinion you could think of.

And when I left the Social Security Administration I had all that knowledge. I had this vast expanse of cases, this large sample size, right? And so I wanted to take what I had learned about what works and doesn’t work and the things social security does to keep people from getting their benefits, and I wanted to make sure to get that information out to as many people as possible. Because nobody really teaches you how to do this, right? 

We don’t learn in school about how Social Security works or how government benefits work. You just kind of have to figure it out as you go, and if you’re at the point where you need government benefits you’re kind of learning at the wrong time, right? That’s not the time to be trying to figure out, “How do I do this?” You want to have some idea of what’s going on so that you don’t get caught in a lot of the traps that are out there.

And so ultimately, that’s why I wrote my book, Social Security Disability Revealed, because I wanted to do what I say right here in the subtitle: I wanted to tell people why it’s so hard to access benefits.

Most people get denied the first time they file their application and they don’t know why so I wanted to explain to people why it’s hard to access benefits, but also what you can do about that to help give yourself or your friend or family member or whoever you’re supporting the best possible chance at having a successful disability claim.

DANIELLE: Thank you so much. And Spencer was kind enough to offer me a copy of his book so that I could read it to prepare for this interview, and I have to say that I knew that the system was a mess (laughs) but I was possibly unprepared for how much of a mess it is though I guess I shouldn’t be surprised. So I’m really interested to talk more about this with you, and I really did appreciate how carefully and clearly the book laid out the entire process which is very convoluted and complex.

What is the difference between SSA and SSI disability?

Before we dive into it too much, for folks who are very new perhaps to thinking about Social Security and disability or who are maybe non-American, can you briefly explain the difference between SSI and SSDI?

SPENCER: Yeah.

DANIELLE: What the differences are? Yeah.

SPENCER: It’s a great place to start because, like I said, this is a system that all U.S. citizens and permanent residents, and even a lot of visitors, anyone who’s working and paying the Social Security tax which is required by law, is paying into the system. And yet, almost nobody knows– literally, almost nobody knows that there even is a disability system because we just don’t talk about it. When people say, “my Social Security,” they mean retirement benefits, right? “That’s something I get when I’m old.”

So we don’t think of Social Security as being something you can get in your 20s or 30s or 40s, or even your 50s, so it’s a great place to start. So if someone is an employee, and most people in the United States are employees, they work for an employer and they get a paycheck every couple weeks.

Well, anyone who’s getting a paycheck is also getting a pay stub from your payroll company. And you notice on that, if you look at it you’ll notice there’s three federal taxes. There may also be state or local taxes, but there’s at least three federal taxes on there: the Federal Income Tax, and that’s the one that politicians love to talk about, right? “How should we use your Federal Income Tax?” But there’s two others on there that people almost never talk about, and that’s the Social Security Tax and the Medicare Tax. 

DANIELLE: Mhm.

SPENCER: That Social Security Tax funds the retirement program, but it also funds Survivors’ Benefits– if you are a worker and you have a minor child and you die the minor child can get Survivors’ Benefits. And most importantly for today’s discussion the Disability program. And the Disability program, pretty simple: if you’re a worker and you have some kind of medical impairment, and it prevents you from doing full-time work on a regular and continuing basis, you can get disability benefits. 

Of course, it’s way more complicated than that, right? But the definition is fairly simple, and that’s the SSDI program. That stands for Social Security Disability Insurance. It’s an insurance program. That tax that you’re paying that’s on your pay stub, that’s basically an insurance premium. Think about it as an insurance program, there’s an insurance premium you are insured, and so if you become unable to work due to a medical impairment whether it be an injury or some kind of chronic illness or something you’re born with, even, you can file an insurance claim and get insurance benefits.

You could also get Medicare by the way, with SSDI. 

On the other hand, SSI, it’s only one letter different but those letters stand for something completely different so it’s a very different program. SSI is Supplemental Security Income. It’s very poorly named because it’s not really supplemental to anything. But that is basically a program for people who– effectively it’s a program for people who don’t qualify for the SSDI program.

Why wouldn’t you qualify? Young workers who haven’t paid in long enough, stay-at-home parents who aren’t working for a big chunk of time, they don’t pay that tax for a while so maybe they don’t have SSDI insurance credits, new immigrants, some older people that haven’t been working for a while. There’re all kinds of reasons– maybe someone who was incarcerated so they weren’t working for many years and now they’re coming out and they don’t have insurance credits. 

Is anyone eligible for Medicare?

So there’s all kinds of reasons why people don’t have those insurance credits for the SSDI program, and so for those people, there’s the SSI program. But it’s much less stable program, the benefits are much smaller, they can be taken away much more easily, so for anyone who does qualify for that SSDI insurance program, it is a much better program and, like I said, it also comes along with the benefit of Medicare coverage even if you’re not 65.

DANIELLE: It’s a big deal. 

SPENCER: I know someone who is in his 30s but he was found disabled and so he is receiving Medicare coverage, and yeah that is a really big deal because if you need lots of healthcare for an injury or chronic illness or something, some sort of condition you’ve had since birth if you can’t work in the United States, a country where we link health insurance to work and you can’t work you probably don’t have good health insurance, right?

So that Medicare is a really important benefit, and as I talk about in the book some people even file for benefits not even because they need the monthly benefit from Social Security, but for some people that Medicare benefit is even more important to them and that’s why they want to be found disabled. 

DANIELLE: I think that’s very common in the clients I work– so I work with a lot of folks who are autistic and many of them do work but many of them do not or cannot, for various reasons, and most of the folks I talk to there are less interested in that monthly kind of stipend and much more interested in having access to healthcare coverage for some of the co-occurring conditions they’re dealing with. So that Medicare piece I think is a huge one.

Thanks so much for that–

SPENCER: I just want to say if you have another earner in the household, someone’s thinking like, “Why wouldn’t you want the monthly benefit?” It’s not that you don’t want it–

DANIELLE: Oh, no. It’s just not the main thing.

SPENCER: If you have another earner in the household you might be able to cover the basics like rent and utilities and food, but maybe that person doesn’t have healthcare with their job or good healthcare and so– or just can’t cover the amount of healthcare that the disabled member of the household needs, and so there’s all kinds of reasons. Every person is different, every impairment is different, every family is different, every situation is different. 

But that’s why I talked about in the book how I cover everything from end to end, right? From before you even apply all the way through appeals, but this is why I set the book up that way. I wanted it to be useful by anyone, in any situation, at any point in the process.

If you’re someone who just wants Medicare, this book is for you. If you’re someone who says, “I don’t need Medicare, my partner is in the military or is a veteran and so we have care,” or, “We have Medicaid,” or whatever, this book is for everyone, and will take you through all parts of the process. The disability part, the Social Security part, also the Medicare aspect. 

DANIELLE: Yeah. It is a really helpful piece of writing, so I’m really glad we have you on the show to talk about it with us.

What type of documentation is required for a disability claim?

One of the things I did like about the book is how you split up kinds of claims into folks who have a physical disability or a psychiatric disability, or a congenital, for lack of better word, disability like autism or Downs or Angelman or any of those kinds of things, a born-with disability. 

It seemed like the claim was– or tell me what you think, what I understood from reading it was that you were seeing that the system was more able to support folks with physical disability, where the case was really clear cut that say a back injury or a broken leg or a concussion was going to cause them now be able to return to work.

Whereas things like a psychiatric disability, like a short-term spell of depression or anxiety or something that could be treated, or a congenital or neuro-difference, like autism for example, was harder for judges to assess or harder to develop a good claim for.

Is that true and do you have a sense of why? 

SPENCER: Right, and what you just said there is the key element and the reason why I divided up the (speech cuts out). So, for people who haven’t yet looked at the book, part four I talk about medical evidence and how Social Security looks at your medical records. And I disclose at the beginning I’m not a doctor so I’m not writing this from a medical standpoint, but I am a lawyer and I worked for the government for almost 11 years as an attorney advisor for Social Security, and so I know how Social Security looks at your medical records from a legal standpoint.

In other words, looking at your medical evidence to decide if it meets the legal definition of disability under the Social Security regulations. And I split up, as you’re talking about, I split up section four into four parts: physical visible impairments, physical non-visible impairments, and then two different kinds of mental health impairments, and I split that section up into mental health impairments with the potential for improvement with treatment, and then permanent mental health impairment and I’ll come back to that in a moment. 

But really what you’re talking about here is there is a key difference between visible physical impairment and everything else that’s non-visible. And it’s not that you’re less disabled if you have a non-visible impairment, it’s not that it impacts you in a less severe way, it’s not that you’re more able to work if you have a non-visible impairment, that’s not the reason I do it. The reason I do it is because of what you said right there at the end of your comment which is– and I think this is, people know this. This is just kind of logical, right? That there are certain visible physical impairments that just by their very nature are easier to prove. 

For example, a knee impairment. When someone has a knee impairment like a torn ACL or a back impairment like degenerative disc disease, you can put someone into an MRI machine and get a 3D image of that person’s back or knee and have a physical manifestation of why they’re disabled, right? 

A radiologist can look at that image and describe it in a report and say what they’re seeing, and a judge who is trained in how to read that medical lingo can read that report and get a visual representation and understand, “I know why this person’s disabled. I can read this report and I can visualize it, and I can understand why this person can’t walk or bend or lift.”

That’s harder with things like fibromyalgia, Ehlers-Danlo Syndrome, connective tissue disorders, and of course when we get to mental health disorders, there are of course ways to evaluate mental health disorders and tests that can be administered, but it’s not the same as someone using a cane or looking at an MRI, right? 

DANIELLE: For sure.

What disability is hard to prove?

SPENCER: So there is a difference. Whether judges should treat these impairments differently? They probably shouldn’t but it’s just reality that they do. And so that’s why I split up the book like that so that people understand if you have a visible physical impairment here’re the kinds of evidence you’re going to need, and here’re the things you need to consider. And that’s different, it’s a different consideration if you have no visible impairments, if you have only non-visible impairments. 

Another quick note on that, most people have more than one impairment, right?

DANIELLE: Oh, for sure (laughs).

SPENCER: So it’s not like people should refer to only section one or only section two. I would say read all four sections because you never know what you’re going to find in one of those sections that makes you think, “You know, maybe I need to see a specialist in this particular field. I have this symptom, I didn’t think about that as being disabling. Maybe I do need to explore that and see a specialist or see a medical professional because maybe I have more impairments that can be documented than I even know about.”

So most people have both physical– I would say most people who have a visible physical impairment also have some kind of non-visible, whether it’s physical or mental health impairment. 

And then there might be many people who have a non-visible physical impairment, and then they develop some kind of visible physical impairment because when you have other kinds of physical challenges– sometimes I’ll throw my back out, and then I sit the wrong way or I might hunch and then I can problems somewhere with something else that might be recognizable in an MRI machine, right?

So especially as people age, it’s good to be familiar with how Social Security treats visible physical impairments and non-visible physical impairments, and mental health impairments.

DANIELLE: Yeah.

SPENCER: Do you wanna go ahead and talk about the differences between the two mental health sections as well?

DANIELLE: Sure! Yeah, so you had done it in this– there’s the permanent ones, right? Like we would say autism would count as a permanent mental health condition or congenital– it’s something you’re born with, it’s something you have when you die, right?

Same as Downs. A lot of folks listening to this are ADHD, a lot of people have– but then there’s also folks who have anxiety disorders, depression, Schizophrenia, bipolar, OCD. Those are all under the neurodiversity umbrella but they are very different in how they’re treated and how they’re kind of framed, how they’re thought of in society in terms of something that can improve, symptoms can improve or symptoms are not going to improve because they’re something you’re going to have for the whole life.

And it does seem like Social Security treats those two piles of conditions in very different ways in how they assess. 

What mental health problems are considered a disability?

SPENCER: Yeah, and there’s two reasons they treat them differently. The first is there’s probably different evidence involved with someone who has something that they didn’t have and then that can be developed like anxiety, and that could potentially be treated to a point where that symptom can be reduced. Whereas for something like intellectual disability or Autism Spectrum Disorder that may not be treatable.

But the other reason that Social Security judges look at these two types of mental health impairments differently, is that remember the definition for adults is whether you can do full-time work in the national economy. And so what they’re trying to assess is not only do they want to learn about your impairment, but they want to learn about how your impairment impacts your ability to do full-time work. 

And part of that equation is are you getting treatment, even if you can’t work now? Has it been the case for 12 months? Have you been getting treatment? Can you get treatment in the future? And so impairments where there isn’t readily available treatment, where it’s accepted within the medical community– again these aren’t my opinions– it’s accepted within the medical community that there are certain impairments that are generally considered to be permanent, and so the judges– who are not doctors, right? So they’re not making a medical determination, they’re taking what the medical community has already decided. 

That there’re certain conditions that should be considered permanent and those judges are saying, “Okay, if you have a condition that’s considered permanent, I’m not going to be expecting you to get treatment as a condition of finding you disabled. I’m not going to be looking for treatment necessarily that can help you get back to work if the medical community says there are certain impairments for which there is no treatment that might allow you to return to work.”

Now, that’s not suggesting someone with Autism Spectrum Disorder or someone with intellectual disability can’t or won’t work. I talk about in the book how that’s not the case at all!

DANIELLE: Yeah. 

What is SSA definition of qualifying impairment?

SPENCER: People with all kinds of different impairments do all kinds of different jobs, and we know that there are many people who have permanent mental health disorders where they might qualify for Social Security Disability, but they’re able to work, they choose to work, they want to work, they’re able to work full-time, and they don’t need Social Security Disability.

So I’m not making it a judgment about whether this applies to everyone, right? But for someone who has a diagnosis of Autism Spectrum Disorder or intellectual disability, I do point out in the book and that’s why I point this out, that judges do treat those impairments differently from something like anxiety or depression or PTSD which is something that is considered to have developed, and so judges want to know, “Okay, you have this impairment. It happened because of something that happened in your past, in your life, in your environment. What are you doing to make an attempt to treat these impairments?”

They may not be treatable, you know? If someone developed PTSD due to military service, that person may always have PTSD, but the judge wants to at least understand what treatment may be available and distinguish that from something like Autism Spectrum Disorder or intellectual disability.

DANIELLE: Yeah, I think– thank you, that’s really helpful. And I think part of what I’m hearing is that although there may be diversity in a population, say, of people with intellectual disability or with autism or with whatever, that the law is going to apply to each of those people in the same way in a lot of cases. 

And so someone might be able to work full time with IDD for example, and there might be someone with the same diagnosis who is not able to work full-time, and Social Security is going to, in an ideal world anyway, apply its laws and its processes to those people in the same way, regardless of the want of the person or their drive to work or not work. 

SPENCER: Exactly! And it’s actually easier to apply the law with permanent mental health disorders because the judge doesn’t have to consider the treatment that the person’s getting, the level of effort that they’re putting into treatment, you were prescribed this medication maybe if it’s anxiety, are you taking your medication? Are you attending counseling on a regular basis?

There are these things, these elements of treatment, and questions that have to be asked and an assessment that has to be made when it’s a potentially treatable impairment and those questions don’t need to be asked for permanent mental health impairments. So, in a sense, the reason I separate them is the permanent mental health impairments, they’re more clear-cut situations for the judge, and for the claimant and their families, it is actually easier to be found disabled because it’s a little more black and white. 

DANIELLE: Yeah.

SPENCER: If you meet these criteria you’re disabled, whereas with treatable impairments we are not only evaluating the symptoms but we’re also evaluating the treatment, because if someone is found to have certain symptoms and diagnoses and their treating source said, their counselor said, “This person can’t work now, but I estimate this person should be able to return to work in six months if they pursue this treatment,” if you’re going to ask for benefits the judge wants to see you’re pursuing the treatment, right?

DANIELLE: Yeah, yeah.

SPENCER: And that’s the key difference between those two types of mental health impairments, and that’s the reason I make the separation in part four of the book.

DANIELLE: That’s really helpful, thank you. And a lot of what you’re saying makes a lot of sense. Having read the book, a lot of your concern– I’m going to rephrase that. 

What is the most an attorney can charge for disability?

So you mentioned a couple of times in the book that you are not a fan of DIYing your claims process and that you feel like people should hire an advocate when they can. And a lot of your explanation of, for example, those four different types of claims and what kind of disability you’re dealing with, and what your evidence base has to look like, and how the judge is going to assess, all these things sound very complicated, but are there specific reasons that you think people might try to DIY a claims process that you would counsel against?

SPENCER: Yeah, they’re trying to save money.

DANIELLE: Mhm. 

SPENCER: (laughs) And that’s not a good idea. So here’s the analogy I’d like to use because most people own a car– I actually don’t at the moment, but most people have owned a car at some point in their lives, right? So let’s say that you take a car to a mechanic and there’s a problem with it and they want to charge you 3,000 bucks, and you want to know why right? Most people want to know why before they dish out that kind of money.

Well, I could give you a short primer on how a car engine works, it doesn’t mean you’re qualified to make that repair on your own.

DANIELLE: Yeah.

SPENCER: Right? It just means I’m trying to help you understand that process– similar kind of thing. My book, it’s a great resource– of course, I think it’s a great resource, I wrote it, right? 

DANIELLE: (laughs) It’s a good resource! I agree.

SPENCER: I wrote it to be a great resource for people to have an introduction of the process, to understand the process, to understand the lingo, to understand what’s going on. I did not write this book to encourage you to do this on your own. Because this is an introduction to the Social Security Disability process, whereas Social Security Disability representatives have been doing this for many years, they went to law school, they know legal procedures, they know the rules of evidence. 

Legal professionals are the mechanic. They know more about the process than you, and when it comes to your car, if they damage your car that could be 10,000, 20,000 bucks for you to have to buy a new car, it’s not really that different. 

You know, if you would be getting $2,000 a month if you’re approved and you’ve got two years of back benefits plus several years of benefits going into the future, it’s not an exaggeration to say that your Social Security Disability claim could easily be worth $100,000. So that’s not really the time to be pretending or playing lawyer, right?

DANIELLE: Yeah.

SPENCER: You want to have someone who knows what they’re doing. And as you said, I’m constantly talking about this in the book where I talk about in the beginning who the representatives are, how do you find one, how you can hire one, how they get paid. But then I circle back at the end and I provide a very concrete example about someone who if they hire a representative they win their case, and if they choose not to they lose their case. 

And the representative’s maximum fee in about two weeks from now, at the end of the month, will be going up to $7,200. That’s the most a representative can get from you, and only if you win your case and you don’t actually have to pay them, it comes out of the benefits that Social Security would be sending to you, they just divert part of it to your representative for their fee, all happens automatically. And again, I talk about that in the book.

But the important part to understand is, you’re getting a bargain for $7,200. That is not a lot of money for a lawyer.

DANIELLE: No (laughs).

SPENCER: People have car accident cases, and they’re paying a third of a million dollars to their lawyers, so for your Social Security representative to help you for $7,000 and only if you win, that is a real bargain and it is absolutely something that everyone should do because you don’t know the law, you don’t know the judges, you don’t know deadlines.

For example, you have to have evidence– I mention this in the book– you have to have your evidence to the judge at least five business days in advance, one week in advance. Can’t walk into the hearing with evidence. If you do the judge can say, “You missed the one-week deadline, I’m not considering this evidence.” 

And even if that evidence is like the thing that shows that you’re disabled, the judge can say, “No. I’ve looked at your evidence, there’s a rule that’s there so that this doesn’t happen, so that I can prepare for your hearing, I’m not considering it,” and they’re allowed to do that. 

So you don’t want to miss that deadline, you don’t want to miss your 60-day appeal deadline. There are a lot of things that happen in order and you don’t know what they are and the representatives do.

So it’s really, really important that you hire someone who knows all the rules, the deadlines, how the judges operate, how a hearing works, who’s going to testify at your hearing, how to help coach you so that you know what to say and not to say at your hearing– and that’s allowed. 

Attorneys are allowed to coach their witness. They’re not telling you to lie and they’re not telling you what to say but they’re telling you how to present it, and that is 100% allowed in a legal proceeding. 

And you really need that evidence, that counsel, it is well worth it. But what a lot of people do is they’ll hire a representative and they’ll think, “That’s all I gotta do. I hired someone, I signed on the dotted line, I’ll let my lawyer handle everything.” 

That’s also a bad idea. That’s like just slightly above not having a representative at all. Because the lawyers don’t get paid a lot, and that sounds great, right? Except what it means is these representatives, whether they be attorneys or non-attorneys, they have to take on a lot of cases. It’s a volume business. So they may have 100 other clients at any one time besides you. 

So they’ll look over your medical records, they’ll help you prepare for the hearing, they’ll coach you on your testimony, they’ll make sure that no deadlines are missed, but there’s a lot that they can’t do. They’re not going with you to your doctor. They’re not helping you figure out what sources to see. They’re not helping you talk to your doctor about your symptoms, they’re not helping you get that very correct and accurate language in your medical opinions. In other words, the representative is kind of stuck with whatever you give them as far as evidence is concerned. 

And sometimes that’s a winner of a case and sometimes that’s a loser of a case. So if you want to know what you need to have in that medical record in order for it to trend toward the winner side, which of course everyone does, right?

DANIELLE: Yeah.

SPENCER: That’s why the book is important. The book is important so you can be an educated claimant and then you hire a professional representative, and then the two of you work together to present the best possible case to the judge. That’s the formula for giving yourself the best possible chance at a successful disability claim.

Are most people denied disability?

DANIELLE: Yeah, in a system that’s pretty stacked against certain kinds of folks and certain kinds of claims from passing and getting through. 

SPENCER: Oh yeah, no, the system is stacked against everyone. Yes, there are certain things like non-visible impairments where you may have a harder time than visible impairments, but there’s a reason over 70% of people are denied when they first apply, and almost 100% of those people are denied the second time around. It is very intentionally designed to deny claims.

The Social Security Disability system is not set up to help you, it’s not set up to pay your claims, it’s not set up to be your friend. It is there, but there are too many applicants. There are over a million people who apply for disability every year, and the government just can’t pay all those claims. There’s not enough money in the system to pay anywhere near all those claims. They have to deny as many claims as possible in order to keep the entire Social Security system financially solvent, and the reason is because they can’t deny retirement claims, right?

When someone is 67 and they apply for retirement, that’s an automatic approval, there’s no decision-making there. So the way that Social Security manages the outflow of money is by denying disability claims, and they need to deny as many as possible, and they deny them with surgical precision.

And that is why it’s important to understand how the system actually works, where the pitfalls, where the speed bumps are. You have to know who’s telling you the truth, who’s gaslighting you, who’s lying to you, what you need to do and say and when, and it’s really important that you understand all that before it starts so that you don’t accidentally do something that could be really detrimental to your claim that you said or did just because you didn’t understand the process. 

DANIELLE: That makes a lot of sense, thank you. So, I know we’re running out of time, real quick: in your book, you talk a bit about how the system is flawed in part because there’s not enough money to fund everyone, and you bring up the idea of universal basic income as a way that might be more efficient for both the government to pay claims and for individual people on the ground to have access to the support they need to be able to get medical care for example.

How would UBI help people?

Can you tell us more why you think UBI would be the way forward compared to all the different ways people have suggested improving the Social Security Administration process? 

SPENCER: Yeah, but I want to start by pointing out it’s the last chapter of the book because I recognize that this is not a short-term solution and this is not something that Congress is going to pass anytime soon–

DANIELLE: It could be a whole ‘nother book, yeah (laughs).

SPENCER: Right? 

So the first 33 chapters are about the system we have now because for today’s claimants or for anyone who can’t work, that’s the system that you really need to know. Chapter 34 is suggesting how we could do it better overall as a country. And this is not really a new idea, this is something that Andrew Yang talked about during the last presidential election, right? Giving everyone $1,000 a month. 

And it sounds really expensive, like how could we just give everyone $1,000 a month? But actually, as I talk about in the book, it would be cheaper for everyone. It would be cheaper for the taxpayers, it would be cheaper for the recipients. It would just be way more efficient and cheaper for everyone. So we ran just a back-of-the-envelope calculation where we aggregated all of the federal benefits that we could think of, not just Social Security, but also housing benefits, SNAP, WIC, TANF, school lunch, all kinds of things like that. 

We just said, “If we put all of this in a pot and we divide that by every American adult much much would that be?” And the rough estimate was about seven to $800. And that’s only the benefits, that’s not counting the bureaucracy. 

Social Security has tens of thousands of employees, just to administer the disability program, and that’s not counting all of the other government agencies like Health and Human Services, right, that have their own programs. Housing and Urban Development.

So if you eliminate the bureaucracy, if you didn’t have this apply and approve system, if you just gave people money, it’s not hard to see how you could easily get to $1,000, right? So if you take out this need to apply and be approved– which if you think about it, it’s not a great system. It’s taking advantage of people when they’re having a really hard time. 

Take disability for example: in order to be found disabled you can’t be working, but if you’re not working you probably don’t have health insurance which means you probably can’t go see a doctor, which means you probably get good documentation. 

And yet, in order to be found disabled so that you can get Medicare coverage, you have to have good documentation which you can’t get if you can’t get care because you have no health insurance because you have no job when having no job is the whole point of applying for disability benefits. Right? 

So it’s circular, but that’s what we’re doing with all of these apply and approve systems. We’re taking the people who are having the hardest time in our society, and we’re kind of kicking them when they’re down. And we’re saying, “Oh, you’re having a hard time? Prove it. Give us records. Give us evidence.” 

And these are people who don’t have money to get evidence, you know? It may be simply that you could get the evidence from a doctor, but you literally can’t afford to pay to have that doctor print out those records. When we make people apply for any government benefit, what we’re doing is we’re basically saying, “Oh, you need something? You have to prove why you need it.” 

But we don’t do that for other government benefits. For example, people don’t think of the mortgage interest deduction as a benefit, but it is kind of just like every other government benefit, right? If I own a home and I have a mortgage and I’m paying interest, when I file my tax return every year I declare that deduction, and the government sends me a check after April 15. How’s that different than if I claim a housing or a food or a medical benefit? It’s the government sending me money either way. It’s a public benefit.

But there are certain demographics of Americans that ask for the whole mortgage deduction versus that ask for SNAP or WIC, right? And we treat those people differently. I don’t think we should, but we do and I think it’s really terrible because every time you make someone apply for something and you put up barriers, “Fill out this application, fill out this form, do this, don’t miss this deadline,” someone’s going to miss a deadline or not fill out a form right or something, and that keeps people from getting benefits that they really need.

DANIELLE: Mhm.

SPENCER: And what people have found in California and other places when it comes to something like homelessness, the best way to get people out of homelessness is not to make them jump through hoops and fill out applications and fulfill all kinds of requirements, the best way to keep someone from being homeless is to literally just give them a home.

And in the long-term even though that seems really expensive, in the long-term that helps someone get back into the workforce and pay taxes again, and then instead of receiving government benefits for the next 20 years they’re contributing for the next 20 years and it ends up paying for itself.

And so that’s the idea behind the UBI. Instead of someone being unable to work and applying for disability benefits and being denied and being in that system for several years, if you literally just gave people $1,000 a month, it’s not a lot, they’re not going out to eat every night, right? You’re not living a life of luxury, but maybe it prevents you from losing your apartment and so maybe you are able to apply for jobs and get some healthcare and apply for jobs and get back into the workforce faster, and then you’re paying back into the system faster. And this isn’t a new concept. 

A lot of countries in Europe have some kind of universal credit or universal payment. In the United States, we’ll use the word “socialism” and pretend like the government’s just paying out all this money, and they are, but then they’re helping people get back into the workforce and so they’re also taking in a lot more money and we don’t really look at that side of it in the United States.

We’ll talk about, “Oh, the government’s paying out all this money,” but we don’t think about the fact that we have so many people out of the workforce who don’t need to be out of the workforce. They’re telling us, “I need specific help,” if we just gave them that help they would get back in the workforce faster. 

And so that’s the idea behind a UBI is it’s more kind to the most vulnerable people, it gives them what they’re telling you they need so that they can go back to being productive members of society.

No one wants to be disabled, right? No one knows this better than your audience. No one wants to be disabled, some people are disabled and unable to work, but nobody wants to be in that position, and if we could do things as a government to help people get out of that position I think people would prefer to do that, especially since it would be so much cheaper for the country, for the taxpayers, it keeps people productive, it keeps people happier.

The only people who lose in that situation are people like me who work for the government. That big bureaucracy, right? Because, you wouldn’t need that whole bureaucracy and so what? Good. Those lawyers can go find other legal jobs, they don’t need those positions that are– you’re kind of a middle person at that point, right? Between the purse strings of Congress and the people who need the money and we just don’t need that. It’d be better to just give people money and let people use it for what they need it for. 

We learned that lesson during the pandemic when we just gave people money so that they could pay rent, buy food, and surprise if you give people money they’re going to spend it, and they’re going to spend it on exactly the things that they need.

DANIELLE: Yeah, yeah. No, I completely agree with you. Thank you. That was so eloquently said, and for folks listening, we do have quite a lot of episodes at this point about helping autistics in the workplace, because as Spencer was saying to make it more about this audience a lot of us do want to work and are being stopped from being able to work for various other structural issues going on, so I’m going to put some links down below. 

Spencer, would you also help add to the link pile and let folks know where can they find out more about you, your book, and all this work you’re doing? 

SPENCER: Sure. Well, the best place is our website, it’s bishinspublishing.com. That’s B-I-S-H-I-N-S publishing.com. On our website, we have a description of the book, the table of contents, some articles written by the book’s editor, interviews that I’ve done, links to all our social media, Facebook, Instagram, and Twitter.

SPENCER: And of course most importantly all of the places that you can acquire the book including Amazon, paperback and ebook, but also Barnes and Noble, Scribd, you can go through bookshop.org and help support a local bookstore–

DANIELLE: Love Bookshop (laughs). 

SPENCER: But I also have on the website information to give to your local library and they can get it in paperback or ebook format, and I have all the information they need. You can give that to your library, tell them you want them to get that book to help you and other members in your community.

Every community in this country has people applying for Social Security and Disability benefits, and everyone needs help.

DANIELLE: That’s very true. Thank you so much for being here Spencer, I really appreciate it.

SPENCER: Yeah, thanks for having me. 

DANIELLE: Thank you so much for joining me on the Neurodiverging podcast today. I hope you found this episode insightful and interesting, and that it made you just angry enough to go out and do something about improving Social Security for everybody in the United States. 

If you would like to check out Spencer’s book I highly encourage it. He gave me an advance copy to read in preparation for the interview and I can’t say I enjoyed it, but I learned so much and I’m really, really glad that I got the opportunity to read it.

Links are down below, but you can also check out bishinspublishing.com where he has links to Amazon and Bookshop and all the places where you can buy the book. Support small authors (laughs).

Also please go check out neurodiverging.com for the transcription, further show notes, we have quite a couple for this episode, as well as lots of upcoming events, webinars, group coaching programs, classes, et cetera that Neurodivergining is putting on over the next couple of months. 

Thanks for being here with me and please remember: we are all in this together. 

1 Comment

  1. In the last presidential election, I was a huge supporter of Andrew Yang and subsequently Bernie Sanders. This was also coincidentally the last time I had any hope in our country.
    Putting politics aside, I’ve reached a juncture in my life where I’m grappling with extensive autistic burnout and overwhelming hopelessness. Despite my unwavering efforts and hard work, a perpetual sense of unacceptance renders everything futile. I’ve been let go from over 50 jobs due to struggles with fitting in, navigating workplace politics, differences in cognitive thinking, and being autistic – even though these reasons were not explicitly stated.

    I find myself at a breaking point, worn down by a lifetime of rejection, firing, misjudgment, isolation, and bullying for being different. Despite desperate attempts to mask and be a people pleaser, my unique way of thinking marked me as an outsider. Even as a 5-year-old, I remember my mom telling me I was an alien from another planet – a statement that, despite her love, left me feeling like I didn’t belong.

    After being singled out for layoff in my last job, I lack the energy and focus for another job search and the accompanying dance. Adding to the frustration, I’ve discovered the life expectancy for autistic/ADHD individuals is 39 years old. I just turned 40. Yet, I’m 25 years younger than the age needed to qualify for the social security money I’ve paid taxes on since I was 16. It’s infuriating that the federal government took half of my recent severance check for taxes, and it is highly likely I will never see any of the money that I paid into this social security “retirement system.”

    While UBI sounds promising, I have questions. Where in the entire country can one live safely on $1,000 a month in 2023? Are there proposed limits on wealth or income, specifically for UBI? I’m not referring to the impractically low limits to qualify for any kind of government benefits currently. I’m referring to income caps to filter out the ridiculously rich like Donald Trump Jr, Kim Kardashian, and Jeff Bezos, who would probably not see the benefit of a $1,000 check a month.

    Living in Hawaii, the most expensive place in the country, I’ve seen how cost-of-living allowances (COLA) vary, frustratingly leaving federal poverty levels uniform.

    My concerns extend beyond UBI. As a late self-diagnosed autistic individual, I’ve grappled with not belonging and faced challenges in various aspects of life. Despite excelling at work and being passionate about my job in every role I’ve had, I’ve experienced constant rejection, dismissal, and layoffs due to social situations and workplace politics stemming from my neurodivergence and differences.

    Now, amidst experiencing severe autistic burnout, and despite the incredible lack of cybersecurity professionals needed in this country, persisting seems insurmountable. A few years ago, I broke my ankle, and despite being able to do my job still, I was fired because I couldn’t drive at the time. After facing a lifetime of rejection, I tried to end my life. At that point, I had experienced rejection hundreds of times, and it was too much. I am not saying that I am currently suicidal; I’m saying statistically I don’t have long to live because of society’s judgment and the subsequent challenges I face because of these. Stress is a huge killer.

    I am lucky enough to be very intelligent and skilled in my chosen career. I realize that this is not true for all autistics; there’s a huge spectrum of abilities and functioning levels. For me, I would not be considered disabled if not for the way society is right now; I would thrive in an ideal environment where I was appreciated, not judged, understood, and accepted. I realize right here that this probably disqualifies me for social security disability benefits, but we do not live in an ideal world. We live with these hardships due to discrimination. I know the government, specifically the SSA, probably does not take these into account when determining if you could work full time. The answer: yes. Do I feel like I can actually keep a job for a long period of time/sustain employment? No. Although I’m a very hard worker and highly productive, eventually they get sick of me or I don’t play the right social games, and I’m out. Now I feel broken because of this.

    I crave a space where my knowledge and talents are acknowledged, where acceptance, understanding, and inclusion prevail.

    I recognize my privilege in having skills, yet ongoing isolation, judgment, bullying, and rejection have left me feeling far from fortunate. Navigating the complexities of social security, especially in Hawaii, adds to the challenges.

    If this post is approved, thank you for providing a space to vent. I’m currently in crisis with no one who seems to understand.

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