... Some 30 million Americans ... experience significant health problems that defy diagnosis. Their symptoms range from mysterious heart attacks in teenagers to spine abnormalities, intellectual disabilities, low muscle mass, digestive troubles, and countless others. Their ailments don’t follow well-known disease patterns.
In many such cases, doctors order batteries of tests: DNA sequencing tests to gather information about genetic changes that may cause disease, exome sequencing tests to examine the protein coding regions of the genes, and imaging scans like MRIs, PET scans and CAT scans to get a detailed look inside the body.
But even then, diagnoses elude these patients. At a loss, they seek answers on the internet or in medical books. ...
[T]he Undiagnosed Diseases Network (UDN) ... works to help patients get diagnoses and advance our understanding of health and disease. ...
The UDN provides an avenue of hope. Difficult-to-diagnose patients typically reach the UDN through referrals from their primary care physicians. Patients or their parents complete a short online application that is reviewed by the UDN Coordinating Center at Harvard University. The Coordinating Center determines which patients to accept and which site to send them to. To date, the UDN has received 5,700 applications and accepted 2,246. “For those who are not accepted, we still try to provide a specific recommendation to help them” ...
Why do I post this? It's because a fair number of Social Security disability claimants have undiagnosed disorders. Social Security usually deals with these cases by denying them at the initial and reconsideration levels. Administrative Law Judges often deny them. If there's no label, the problem has to be imaginary, right?
21 comments:
Recently, it has occurred to me how many of these decisions are made on unreliable assumptions about medical evidence. I see over and over where serious psychological symptoms such as mania, severe depression, even psychosis are ignored because the person's "mental status exams" were mostly normal. These ALJs think they know what they are talking about when they misinterpret findings like this. A mental status exam is a brief snapshot and not something to rely on regarding overall functioning. On the physical side, we see often that "objective" findings such as MRI results do not support the claimant's allegations of disabling pain. And, until I did some research, I fell for that. An MRI tells little about the level of pain a person is experiencing. Many people have significant findings on an MRI with no pain while others mave minimal findings with great pain. And, interpretations of these findings can vary greatly depending on who is interpreting it. I read about a lady who had 10 MRIs within a 3 week period with vastly different findings. Yet, ALJs assume they know what these findings mean and, if there are not really, really bad findings they say it is not consistent with the claimant's allegations. So, far too many of these decision are based on speculation, conjecture, and just plain wrong assumptions about medical evidence. But, as long as they don't approve too many folks, the agency is just fine with it.
SSA and ALJs and State agency analysts and Appeals Council attorneys-examiners are not trained to resolve medical mysteries. What is the solution to this article? To just grant SSDI to everyone who applies, no questions asked? What different screening system would you put in place?
Exactly 10:54. ALJs are educated and trained to deal with evidence. They are NOT medical experts. And they are also oath-bound to follow the regulations. To be considered a severe impairment, a claimant needs an acceptable medical source to make a diagnosis, and then for that condition to still significantly limit the ability to perform basic work activities for 12 consecutive months despite adhering to prescribed medical treatment.
It does lead to a horrible Catch-22 for many claimants. They cannot be approved for disability benefits because there is insufficient evidence that an ALJ can use, but because they don't qualify for benefits they cannot afford to try different doctors until one finally figures out what's going on with them.
But the idea that ALJs would grant benefits to people with undiagnosed conditions but just don't out of callousness is just WRONG
The problem 11:18, isn't insufficient evidence they can use - often it is misinterpretation of evidence, rejecting some while giving excessive significance to other evidence. They play doctor thinking they have more medical knowledge than they do. I have not been asked to design a better system but, if I was, I'd start by getting more opinions from treating physicians. Instead, the agency changed the regs so its easier to ignore these opinions. Despite conventional wisdom within the agency, the treating physicians are the best source as to what is really going on with the claimant. The idea that these opinions should be rejected because an alleged doctor who spent 5 or 10 minutes reviewing a DDE form disagrees is ludicrous but we see it every day. And, that was behind the change in the treating physician rule. The agency doesn't care about getting it right or about what medical evidence really means. Just keep the numbers where they want them.
1:06
Treating physicians are not go to provide anything that can be used by some lawyer to sue them for not supporting the claim. You know it would happen, and happen frequently after the first case gets paid. If you dont think they couldnt find a lawyer to run the case, remember, there was no shortage of firms willing to file bogus suits over the election. Those medical providers are not going to do additional work for free, there is nothing in it for them but problems and additional work.
Actually 11:18, a claimant does not need an acceptable medical source to make a diagnosis. The Regulations indicate that not only is a diagnosis not required, a diagnosis cannot be used to establish a medically determinable impairment (404.1521, 416.921; see also POMS DI 24501.020). Rather, a medically determinable impairment must be established by objective medical evidence (i.e., signs and/or lab findings) from an acceptable medical source. A diagnosis is not objective evidence. So, as long there is an objective abnormality from an acceptable medical source in the record, it is possible for an ALJ to find there is a medically determinable impairment even if there are no diagnoses, conflicting diagnoses, or uncertain diagnoses.
2:21 Not so much of the time. We often have treating doctors write reports to support a claim without any cajoling or threatening. And sometimes they contact us and tell us this is not a valid claim and we work with our client to go back to work. But now, with ALJs and federal courts regularly ignoring these reports we often do not bother the doctors. Skeptical is correct - the focus in these applications should be on the treating specialists.
Part of this is a function of our strained and increasingly corporate medical system. I would be surprised if all 30 million have truly unknown disorders. For example, pre-pandemic chronic fatigue syndrome was basically unknown or dismissed by most physicians.(this is changing with long Covid.) I had a young client that happened to treat with one of the top chronic fatigue researchers in Miami before moving to NY. None of the local providers or specialists at very reputable hospital in upstate NY knew what to do with her. There is absolutely no way she would have been approved for disability if not for the excellent treatment notes from the highly specialized researcher.
Our flawed referral system and the absence of a universal health record that is easily portable across all providers also create problems. It is 100x harder to diagnosis rare or complex conditions when specialists lack access to the full medical record.
@3:55 It's not that reports from treating physicians are ignored. It's just that so many doctors will write whatever they're asked, and a HUGE number of these reports are so completely inconsistent with medical evidence that they're of little use. Many times, the report from the treating physician is inconsistent with that same treating physician's notes! Unfortunately, it casts doubt on treating physician MSS's as a whole.
SSA/DDS can only go by the evidence in file. If we allowed everyone who said they experience chronic and severe pain/symptoms, then we'd allow everyone. There has to be some sort of criteria with which to evaluate claimants. There has to be something objective for us to go by.
ALJs and analysts aren't doctors, as mentioned. That's why initial and redetermination claims are reviewed by doctors- PhDs and MDs.
Undiagnosed conditions are why "equaling the intent of the listings" exist. When a condition is present that doesn't exactly meet the criteria, or a dx isn't established completely, there is usually a way to argue an allowance based on functioning and medical findings, IF those findings are severe, objective, and disabling. A report from a treating physician isn't going to be enough, though.
5:42 - you are missing the point. Perhaps consistency is in the eye of the beholder. Is an ALJ really qualified to interpret medical evidence? For example, I previously mentioned the mental status exams. They really don't mean much. But, I constantly see ALJs dismissing other significant symptoms just because they can pick out a few normal findings on MSEs. Anyone who knows anything about this stuff knows how absurd that is. Recently, we had a case where we sent the client for a full pscyh eval (something DDS never does). The objective test results showed significant limitations in most areas - adaptive functioning, social functioning, reasoning, etc. The ALJ completed ignored this thorough, well done report because there were a few normal mental status exams in the file. The ALJ's have apparently been told that if they can find a few of these, ignore everything else. Sorry, but these ALJs just don't know what they are doing. And, honestly, most of hte treating phsycian reports we get are consistent with the evidence. Its just the ALJs don't know what the evidence means. For example, if you look at studies regarding MRI findings, you see they don't mean as much as most ALJs think they do. What you have are lawyers who are for the most part ignorant of medical evidence interpreting (or misinterpreting) medical evidenc ethinking they know as much or more than treating physicians. Who is more qualified to interpret medical evidence, the ALJ or the treating physician? Don't you think it is arrogant of ALJs to think they know more than the treaitng physician. And, I diagree that most will write down anything. We see case after case where the treating physician's opinion is completely consistent with the evidence and where the claimant's allegations are consistent with the evidence. The only inconsistencies are the DDS docs and the ALJ'sopinion Many ALJs sseem to dimply defer to the DDS doctors opinion and reject everything not consistent wth that. Had a recent case where the consistent opinions of two treating MDs, a therapist, and the agency consultative examiner were rejected and the ALJ went with the opinion of the DDS doc. And, guess what, the primary reason cited in the decision was MSEs. but, not all the MSEs were normal, the ones that weren't were just ignored. And, the hallucinations, manic behavior, severe anxiety, homelessness (which shows adaptive funcioning limitations) were all ignored. This is a seriously disturbed person who cannot take care of herself, lelone work. This is the garbage we see day in and day out. Some of these ALJs wouldn't know consistency if it bit them on the .... So, don't give me that garbage about treating physician's writing anything and them not beieng consistent. If that is what you are seeing, you probably just don't have a clue what you are looking at. If you think the opinions of the DDS docs who don't look at the records and simply deny as many claims as possible becuase that is what the agency wants are more reliable than treating physicians.......I better stop here.
This probably won't get published but I'll rant some more. The amount of dishonesty we see in decisions is frightening. Cherrypicking to the point the record is intentionally mischaracterized is common. You want to talk about consistency, yet, evidence that is consistent is ignored while insigificant findings are elevated. It is just dishonest. Oh, and how many times do we see the references about the file being reviewed by the highly qualified state agency consultants. Come on, ALJs know this is a blatant lie. They know these alleged doctors are not reviewing the records and they know the qualifications of some are highly questionsable. Does it not bother you guys to lie like that for the agency? I guess the paycheck is worth it to you. Oh, and what about the DOT? talk about a scam, come on - job descriptions from 1977 and 1986? Are you guys really all so lazy you won't take this issue on, or, again, is the money worth it. You talk about the system as if it is somehow rational -oh, the opinions of the treating physicians are never consistent with the evidence - what a load of ..... The entire system is a sham..........................
@ 5:42, just because a non-medically trained bureaucrat lawyer says they are not consistent, doesn't make it true. I'll trust the treating physician any day over a DDS quack or a lawyer who thinks he know a lot more than he does.
A DDS quack?? Boy has this blog taken it’s last turn. Why you even publish trash like that Charles?
@7:09 I'm not an ALJ, and there is a huge variation in ALJ quality. I was not speaking of how ALJs evaluate evidence, because I can't speak to that. I was speaking on initials and recons, as my comment specifically said. If the treating physician's statement is consistent with the evidence, which shows the claimant is disabled, then I'll allow the claimant, based on the objective evidence, supported by the treating physician information. I don't specifically search for MSEs that are "normal" in order to deny the claimant. But again, I'm not an ALJ, so what do I know?
@7:09 We, in the FOs and DDSs, can't take on the DOT. That information comes from the Department of Labor, and until they decide to update it, we're stuck. I agree, the information in there is outdated and almost useless, but WE can't do anything about that. That's not our fight.
I don't lie for anyone. I help who I can while still getting my job done. If I get fired, I can't help anyone. Changes and improvements need to come from MUCH higher up the food chain. I'm a peon.
@6:47 -
As a FO employee, I couldn’t agree more!
I do the best I can given the information available while applying the policies established by the government.
It’s not personal in the least. If what I have fits or I can make it fit, I do. If not, I’m unwilling to lie to help anyone.
I have several conditions that "contrbute" to my disabilities...one or two, I could overcome, but the cumulative effect of them, I could not. Some are more common, others quite rare. Three of them are found in roughly 1 in 1000 to 1 in more than 10,000. Just 5 of these...the odds of one person having them is about 1 in 294 TRILLION. How can doctors, let alone an ALJ, truly understand how they would cumulatively effect someone? My experiences with doctors is that they are largely incapable of truly understanding how and to what extent debilitating conditions effect people. This seems particularly true of younger doctors.
Certain conditions are seen far more scepticly than others. But, thus not due largely to evidence. Fibromyalgia, for example, has several SIGNS and commonly held conditions, such as IBS. For the sceptics that doubt IBS, do you want samples? ALS has about the same amount of "objective medical evidence"... as in, NONE. But, nobody seems to doubt ALS as disabling. Both are poorly understood. Other conditions are also poorly understood, have little to no objective tests for them, and are often misdiagnosed for years. Plus, these conditions often have a wide variety of symptoms, severities and "outcomes." Doctors often fail to appreciate these differences. Is it reasonable to expect an ALJ to be able to? Let alone, allow them to characterize someone as "not credible" because that person's symptoms don't match whatever they are referencing as the "normal" afflictions of a medical condition?
Good points…so what’s your solution?
Solution? Well...First of all, you have arbitrary rules (the listings and age/limitations) (because Congress demanded them) that don't necessarily correspond to when most become disabled. More like 99% who reach X are disabled, but only 2% ever reach X. However, say 85% of applicants with the condition are functionally disabled (by our rules), with the remaining 15% nearly so. But, these listings seem DESIGNED to be nearly impossible to meet. The problem is that too any ALJs apparently see this as a "standard." How else do you get 20% payers? Granted, 99% payers is good, either.
For solutions: I think potential employers would be "better" judges of someone's capabilites than a VE. Bring in 3 actual (or 5 if you want) that could offer a SGA level job if ONE of them thinks the claimant can do their job. You would pick from among the jobs that the DDS claims they can do... There might be some who are approved now (50+) that might be hired. I don't expect this to happen, but there are employers who need employees and claimants that ALJs claim can work. Would an employer agree? Maybe there could be incentives for employers to hire and give an evaluation. If I put on an application what the VE claimed I had as "skills," an employer would call me a liar. The jobs she claimed I could do, one couldn't be identified at all, one was possibly misnamed, and the 3rd didn't fit the ALJ's hypotheticals.
My biggest "solution" is that the standard of "substantial evidence" should be replaced with "preponderance of evidence." In practice, virtually NOTHING has to support the ALJ's decision. This effectively makes the standard "beyond a reasonable doubt." This gives ALJ's the "flexibility" to make any decision they want to. I guess the question is, what is reasonable? Was th OJ jury reasonable? Chauvin's? Can you be "reasonable" and still WRONG? What about the Dred Scott decision? Plussy vs Ferguson? Roe vs Wade? Brown vs Board of Education? Not trying to make it political...Take the Dred Scott decision. The Justices saw Scott as property...no different that a mule. If you could take your mule to Illinois when you're there, why not your slave? Nevermind the Illinois prohibitions on slavery. I think it was a "dreadful" decision. Please pardon the pun. However, I think it is more defensible than Roe vs Wade. If Scott was the equivalent of a mule, Roe puts a fetus in essentially the same rights as a mole or a wart.
The research I do on the reliability of MRIs the worse it gets. Some practitioners say that the medical history is more important than imaging. Yet, SSA says the opposite. How often do we see an ALJ say the claimant's allegations of disabiling pain are inconsistent with the MRI findings. Guess what. the MRI tell you virtually nothing about the person's level of pain. Do some of you remember several years ago there was a lot being said about forensic evidence and how much of that was not as scientific as once believed. I think we have the same thing here. We have reliance on MRI findings to evaluate pain when there is little, if any correlation. So, will any of you ALJs have the courage to do the research yourself and stop denying people based on bogus reasoning?
I dont know what disability is.
Really.
What makes the quadriplegic that works in our office be driven to work and others not work. I dont know how you can adjudicate it.
I say scrap the whole thing and go with universal income. Heck, thats really what you all want anyway.
What skills does this person have? Stephen Hawking had skills. He also had a support system. Without both, he wouldn't have been able to "work." FDR was President...but, would he have been able to do "light duty?"
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