Physicians’ attitudes about caring for people with disabilities | Hacker News Reader

Physicians’ attitudes about caring for people with disabilities

healthaffairs.org

77 pointsbookofjoe139 comments

N=1, but I can confirm the experience of being disabled and getting medical care is mutually frustrating. Taylorism and one-size-fits-all fails hard.

Appointment times are standardized, despite patients not being standard. I know I'm going to take extra time. I have multiple chronic conditions, getting treatment is a mess. But I can't arbitrarily ask for more time during booking; it's all automated now. Worse, I need to confirm the doctor kept in mind _all_ of this in my treatment plan, because I've had awful reactions when they haven't.

This is terrible for the doctor. I'm making them go over time, be late to the rest of their appointments for the day, and asking them for extra energy and brain cycles for treatment, for no extra money.

And that's not even including accommodations I might need.

I don't blame doctors for not wanting me in their practice. Controls put in place by administrators and insurance companies make me a pain in the ass to treat instead of a fun puzzle. Incentives make me more expensive, with lower payoff and higher risk.

Which... is fucked.

> Worse, I need to confirm the doctor kept in mind _all_ of this in my treatment plan, because I've had awful reactions when they haven't.

I'm not disabled but do have some chronic stuff. A couple decades ago I started carrying my medical record (well...the synopsis) to the doctors office for this reason. Especially when you end up in a clinic rather than a real private practice you're often not guaranteed to even see the same doctor twice.

> This is terrible for the doctor. I'm making them go over time, be late to the rest of their appointments for the day, and asking them for extra energy and brain cycles for treatment, for no extra money.

Though I'd not worry about this. My insurance EOB stated for a simple visit and bloodwork the doctor charged well over $1300. I saw the doctor for exactly 10 minutes. Make them work a little for their money.

That’s not what the doc gets paid. That’s the pretend amount that the insurer and doc have agreed upon, before their agreed upon discount.

Source: doctor.

You as the doctor actually explicitly signed off on the real price? Not some administrator somewhere? Did you have any real input, or is your relationship to the insurer more like a driver’s relationship to Uber?

When working for a hospital, it’s an admin somewhere. When in private practice, the insurer generally has geographic monopoly, so I sign off on whatever they shove in my face if I intend to accept their patients. The only time I have a real say in price is in private practice for uninsured patients, which is where I set aside a piece of my time for charity care.

My EOBs have always stated what the healthcare provider is owed per the insurance price. It shows what was billed (the fantasy number), then the insurance price (or the discount), and patient responsibility (dependent upon an individual’s deductible/copay/oop max).

Is that not true?

That's right, only there is no normal physician visit that bills $1300. The absolute highest reimbursement you're gonna get for an outpatient visit - a level 5 evaluation and management first-time patient visit plus double-coding an 'prolonged visit for high complexity care' (some handful of insurers allow triple-coding a G2212) - (a 99205 + G2212 x 2) is 244.99 + something like $30 (I don't recall the G2212 reimbursement off the top of my head, but it's in that ballpark), for a total of about $275. +/- some adjustment for geography.

That's not what patients pay - that's the total allowable reimbursement to the doc via medicare.

I use medicare numbers here because almost all private insurers negotiate as %medicare. If I'm a hot specialty people are willing to pick an insurance plan over (say, cardiology) and there's a shortage of my folks in the area, I might negotiate up to something like 110-120% of medicare. Most of the time I'll be happy to get 105% medicare, and some folks will end up getting something like 95% of medicare.

To hit $1300 there'd have to be:

-A procedure, likely an inpatient or facility service, such as a small outpatient surgery, or an infusion. - Your doc has an in-house blood work lab and your insurer doesn't cover it, and the bill is actually a lab work bill

That latter bit is a gray area - it's actually barred under the Stark Law, as clinical lab work is considered a Designated Health Service that's barred from self-referral, if it's a third-party lab that they own or co-own. If it's their own actual in-clinic lab, though, I'm unsure of how that works out (I don't run my own lab, so I just know of this second-hand).

If you have a private-information-redacted copy of a 'normal' bill for $1300, I'd be happy to eyeball it - either to let you know something is off and worth appealing, or to learn something new for my self.

I did not intend to claim that the doctor got paid $1,300 for a consultation (that person wrote they received lab work too).

I was clarifying what arkades claimed, which I interpreted as the EOB does not state the true remuneration for the healthcare provider.

Every EOB I’ve ever seen includes both the fantasy number (that no one ever pays or is charged) and the discount negotiated rate which is what the provider actually gets paid including your portion and the insurance paid portion.

You’re more literate than most patients. You’re right, it should list all of the above. I think your post reads (and per other poster, I’m not alone) that you had a $1300 normal outpatient visit, so I read that as you misreading your bill.

No, I know neither the doctor will see that, nor will I pay anywhere near that. It wasn't a "complex" visit, though there were a lot of convenience. Medicine consulting, in-house blood work, etc.

Sorry for the confusion. I stated the EOB to hopefully clarify that. Assuming that they got even 90% of that the doctor would be pushing $200+/hr. just to take my temperature.

Spot on. It becomes more clear when you ask who pays medical professionals salaries?

Insurance companies do.

Insurance companies are medical professionals’ bosses.

The customer receiving treatment has no influence on the standard of care.

Most customers could not afford the treatment at the standard of care they want anyway, hence the reason they purchase via insurance.

A large portion of patients (customers seems like a dirty word in this context...) can't even afford insurance!

Of course, because the root problem in the US is most people cannot afford the healthcare that they expect to receive. Hence all the political maneuvering to redistribute wealth, and the corresponding efforts to avoid having one’s (present or future) wealth redistributed.

That's half true - we've also made it difficult, if not illegal, for people to receive a lower standard of care.

Anybody with a chronic condition needs to go see a doctor at least once a year in order to get the same prescriptions they've been on for decades. There are dozens, if not hundreds of conditions that could be handled by a pharmacy.

I need an asthma inhaler every so often. I have to call a medical doctor in order to receive a prescription for an asthma inhaler. They're non-narcotic, I will always have asthma. But I need to bother a doctor for a medication that should be over the counter. It's silly.

Interestingly this wasn’t the case in living memory in the USA. The insurance cartels have effectively greatly increased prices while commensurately lowering the standard of care.

Medical institutions have been kept onboard with massive increases in revenue that subsequently led to expansions of the institutions that are now dependent on that higher revenue to exist.

My dad told me in the 90s to avoid injury because the family could not afford healthcare. I distinctly recall hospital bills being in the tens of thousands even back then.

I doubt newer cancer care, medicines, imaging, or other care would be cheap in any world, with or without insurance.

And those pricing distortions are due to significant government-imposed regulations and restrictions that tightly limit the supply of doctors and medical services, even in the face of increasing demand.

That's false, but why let the truth get in the way?

The limitation on doctors in the U.S. is based on the available funding for residents. The government supplies the money because private institutions largely are unwilling to do so.

Is it true that unsubsidized residencies would not be profitable? If so, I would not expect private institutions to opt to lose money.

https://www.reddit.com/r/medicine/comments/a0pufi/comment/ea...

Your citation literally proves my point...

Government regulations have been dragging back price of care for ages. Multi-month waiting lines to see a doctor are largely about price ceilings. If docs could price up, their waiting lists would go down commensurately.

Constrained physician supply doesn't do much when physicians can't raise prices in the face of greater demand.

People in these discussions always make things about physician costs. The majority of expenditures in the healthcare system are on drugs and equipment, followed by procedures - physician visits make up a tiny fraction of that.

People (in the US) purchase insurance mostly because the insurance premium is 90%+ paid by either their employer or the government. Everyone understands that the total price is a scam, but the <=10% that you pay out of pocket has an excellent ROI.

This is partly true. In no small part because they tend to control the bulk (or all) of our patient supply. In part because people have gotten the idea that insurance equals care, and vice versa - so people tend not to think about high-impact moments where it pays to go cash.

For instance, I specialize in neuromodulation for highly-treatment-resistance psychiatry. I'm very good at what I do; my mentor is (IMO) better, and one of the absolute best in the country. A single consultation session with him is around $200 if he happens not to take your insurance. If you have a highly-treatment resistant condition, and are about to embark on a course of neuromodulation, it absolutely behooves you to go to him for a single session consultation to plan out your intervention before going to some local mediocre whatever to actually slap the equipment on your head and carry out the intervention.

For instance, people have incredibly debilitating autoimmune conditions. Rheumatic conditions are notable for their polymorphic presentations. It absolutely behooves you to go to an absolute top rheumatologist for one to three visits to confirm your diagnosis before going on a lifelong adventure of immune modulating drugs.

But folks hear "this guy doesn't take my insurance" and treat it as equivalent to "I can't get care there," even when they can afford it. I have a chronic condition, it's terrible, and my absolute world-famous specialist costs me about $250/yr - a small fraction of my monthly insurance premium. Less than my monthly prescription costs. Yet people will go to whatever specialist happens to be near them, while bearing all those other costs, and not investing in the linchpin.

Many people do not realize how cheap it can be to do direct-consultations; and it can't hurt to ask.

Even a doctor pulling down $1m a year is only about $500 an hour, and that could be entirely worth it to get their time and dedicated.

And if you call to ask, the front desk secretary will have absolutely no clue how to route an out-of-the-ordinary request. If the doc you're calling doesn't already do the type of service you're looking for (e.g., a phone consultation), be absolutely firm about wanting to speak with the office manager.

The office manager may not be able to accommodate you, but if it can be done, they're the ones with the authority and autonomy to make it happen.

Who is the top rheumatologist? Who would you recommend? My mother is in constant pain and has gone to a dozen different specialists. We are near Chicago, but I am happy to take her anywhere in the country.

Robert Spiera, currently director of vasculitis at the hospital for special surgery, still maintains a private practice in Manhattan. He's worth every second of the wait time, and every penny of his consultation fee. He is ridiculously good.

How do you find these top people?

Generally, you have to ask doctors already in the know. You find the top academic medical center in your area, and you ask the relevant specialist there who the absolute top person in their field is for a second opinion.

It's not always a guaranteed correct answer - I know for a fact of some people at absolutely top ranked institutions, with top pedigrees, who clearly got there by academic skills and are absolute shit as clinicians - but for the most part, it'll get you where you need to go. Generally the only way you'll end up with one of those shiny pieces of shit is if referred to them strictly by reputation; no one that's worked with them would make that referral.

It's also an answer likely to overlook excellent clinicians - many (many!, maybe most) very good clinicians aren't academics, and this won't route you to them. But you're okay with overlooking excellent docs, as long as you end up at a top doc.

Finding excellent doctors without shiny pedigrees is not something a layman can do. It's just something that local docs eventually come to know about other docs in their social-professional network, and by no means is it an unbiased assessment.

If all you have available is people's online CVs, look strongly at people with mediocre or shitty medical schools and highly prestigious residencies and fellowships. Those are people who had networking and social signaling working actively against them, and managed to positively impress everyone they worked with. E.g., a buddy of mine got into a shit medical school, and got one of the country's most prestigious subspecialties in a prestigious institution. He had to impress every single person he worked with, had to do surpass everyone on his standardized exams, and otherwise be top-of-the-top in every way. He's a ridiculously top-notch doc.

I worked at a company that did background checks on doctors. Part of that involved involved checking doctors licenses in all 50 states, which all do things a little differently. I was paid 6 figures a year to help automate this, and this company had a few hundred other employees who would make calls and do other things to support that. It was all very expensive and could have gone away if only there were some standardized ways for all the states to report these things.

I realized then that I was part of the problem, not on a personal level, but part of everyone's high medical bills ended up in my pocket as a developer at this random healthcare company awkwardly filling our niche.

15% of US workers are in the healthcare industry, and they're not all doctors and nurses. All those people have to be paid, and all of them have to be paid by that ridiculously high medical bill you just received. Sadly, making healthcare cheaper will involve pushing a lot of these people out of the industry, and that won't be politically popular. The insurance companies are going to have to become smaller and lose some profits before things get better.

> Sadly, making healthcare cheaper will involve pushing a lot of these people out of the industry

As someone 20 years into a chronic condition who has to deal with this mess constantly. We'd be ahead if we paid those people to stay home and drink themselves to death. Because it's not just the money it's also the interference in care. That sounds harsh but above and beyond the stress they are actually killing people.

* I'm making them go over time*

Saying this as a non-disabled person, please don’t think of it/word it this way. It’s not you, it’s the disability, and you’re not responsible for it. If you take some time because of it I would gladly accommodate you as a service provider and show understanding as the next patient in line.

Me too, get yours, I'll gladly accomidate.

If people prioritized their values this way then store owners would also fail to serve disabled people.

As a sibling commenter notes, it's great that you recognize the real root of this is often not a lack of empathy by physicians, but instead constraints of the system and especially the payors, who are not patients but insurers (or the federal government). Frankly, I'm surprised a small community-based primary care physician practice is even financially tractable in 2022.

This bit from the article was also very interesting to me:

Participants described both financial and time-related challenges of accommodating communication needs. One non-rural-practicing primary care physician stated: “I took it upon myself to actually hire an outside service to do [sign language interpretation]. They billed the office. …Their bill was higher than what we were making, so it was a losing venture. …It cost me $30 per visit for that patient, out of pocket.”

> who are not patients but insurers (or the federal government).

Or state government, in the case of Medicaid.

This issue is at least somewhat perceptual. If you have to charge everyone the same, but some patients cost more, then you raise the prices to account for the fluctuation and the other patients subsidize the more costly one. If, instead, the extra cost were covered by a tax rebate or something, then the cost is still subsidized to the other patients. Effectively, it isn't any different, it's just a matter of accounting. Making the disabled person pay extra for their services makes the flow of money more obvious, but at the expense of cruelty. I doubt many want to see that be the norm, but I think the result is then an argument of who sees the subsidy being paid on a bill. The doctor seeing a $30 loss on one patient and everyone pays $1 more, or 30 patients seeing a $1 interpreter fee.

You can't just "raise prices" in billing the insurance company though, and copays are often fixed by the insurance company..

You might want to seek out a direct primary care clinic.

Dude, you need direct primary care. When you pay the bills and no one else is involved, the doctor works for YOU. It's a profound difference, and one that it sounds like you need more than most.

https://www.dpcare.org/ is a good place to start, but I guarantee there's direct primary in your city - just google for it.

This sounds good, but I have health insurance to cover for catastrophic health failure, which is very probable for me.

I'd need to pay for both direct primary care and health insurance, and primary care payments wouldn't count towards my deductible.

This is a situation without fast solutions.

I have, many times in my life, maintained direct primary care and insurance at the same time. The difference in the quality of care has been well worth the price for me, and your situation sounds worse than mine.

It is not a requirement of medical care that it be effectively free. You can choose to pay for it! Direct primary is generally quite affordable and worth it, particularly if the regular system is not working for you. The services I have subscribed to over the last fifteen years have generally been in the neighborhood of $60/mo for an adult, and they tend to pay for themselves quite quickly -- once or twice a year, I have some sort of debilitating problem, and a doctor who knows me and cares about me resolves the issue in a matter of hours. Compared to waiting weeks for a non-solution, that's a bargain! Some people make up the fee just in the money they save on prescriptions. Seriously look into it.

I really wish I could just (safely) order whatever medications, tests, and treatments I want online.

Let me consult a doctor if I need one, but also: don't gatekeep treatment from me because the doctor is having a bad day, doesn't like me, etc.

I have a severe, debilitating anxiety disorder. It's extremely frustrating, and sometimes I will have to leave classes I'm teaching, social functions, etc. for no apparent reason because my body starts an anxiety attack.

This flares up once every 3-5 years and has for most of my life. The solution to this, which has worked for most of my life, is: xanax. Take a small amount of xanax before an anxiety trigger, do the trigger, and break the trigger->anxiety association/cycle. It takes like 3 doses total, and the rest of the pills go in the trash (or in the medicine cabinet, and then eventually the trash).

Almost every time I have to go through some weird and insulting dance with a doctor essentially pleading with them for this medication, I get told I'm a drug addict, and finally after explaining that no actually I'm a 40 year old semi retired founder/software developer, not a homeless unemployed addict, which is what your leading questions about what I do for a living led you to think, I might get a prescription for the drug that I have been taking rarely, but to great effect, for 30 years.

I *HATE* the medical system. I hate it. People talk about how the rich get access to some other medical system that gives them what they want with concierge doctors or whatever. Well I'm rich and I don't get that. I'd pay almost anything to just get a license that says "this guy is responsible, successful, and a massive contributor to society. Let him do whatever the fuck he wants and order whatever the fuck medications he needs."

You can just keep the pills. If you're really that strong about avoiding addiction why do you feel the need to throw them away?

I'm not sure where they said they got rid of them to avoid addiction: It is more that they have to convince medical staff that they aren't simply looking to get high but want health instead.

But outside of that, getting rid of unused pills is good practice. These pills are going to expire. Once they do, you can no longer rely on them doing what you expect. Plus, a lot of folks don't like to keep stuff they aren't using around the house - it is always a bit of upkeep or storage.

And that doesn't even get into it being safer around children. It is easier to prevent children from getting into such things if they aren't in the house.

FYI: Check with your pharmacy about bringing unused medicine to them to dispose of properly instead of putting it in the trash.

I am not a doctor or chemist so I do not want to speak definitively, but I highly doubt most common drugs (Xanax, Advil, etc) really lose much efficacy past their expiration date (at least within some reasonable time, like 10-15 years). Happy to be shown evidence otherwise. I wouldn’t rely on this for say, antibiotics to treat an infection, but I wouldn’t hesitate to take a 5 year old Xanax.

> But outside of that, getting rid of unused pills is good practice. These pills are going to expire. Once they do, you can no longer rely on them doing what you expect.

Evidence required.

Expiration dates are put on many things as a CYA, but I don't expect dry chemicals destined for human (or animal!) use kept in an airtight container protected from the sunlight to degrade within 10 years.

Should they degrade, the question is into what, and how much: 5% degradation into what the human body breaks the chemical into should have no consequence.

> FYI: Check with your pharmacy about bringing unused medicine to them to dispose of properly instead of putting it in the trash.

Or just keep it and use it as needed, solving both of your problems at once!

>But outside of that, getting rid of unused pills is good practice. These pills are going to expire. Once they do, you can no longer rely on them doing what you expect.

Disagree completely.

Source: retired neurosurgical anesthesiologist (38 years practice)

Reasons:

1) When you need those pills you won't have them

2) Properly stored pills (dark shelf/cabinet) lose potency/efficacy VERY slowly: perhaps 10%/year. So 5-year-old pills will still work fine. Take one, see if does what it did originally; if not, take another.

3) If you're traveling and need that medication, good luck. You'll wish you'd saved them.

Most medicine has expiration dates. If he needs it only every 3-5 years, it's unlikely the pills will still be usable.

> it's unlikely the pills will still be usable

Pills (and chemicals) are not SSL certificates: they don't cease to work at the expiration date + 1 second.

And in the US at least, FDA requires a max expiration date or one year, despite many being shelf stable for probably decades.

I know I read somewhere about morphine pills from WW2 medkits being found to still be useful 60+ years later - like say 30-50% of stated dose.

The US government tested a bunch of old World War II medication they found laying around, and it had something outrageous like 98% efficacy or whatever.

Maybe a liquid medicine would go bad but I suspect pills are forever.

> it's unlikely the pills will still be usable.

Yes it will. The pills don't actually expire. They will work unchanged for decades.

See: https://www.health.harvard.edu/staying-healthy/drug-expirati...

For medication like this, the doctor will usually prescribe a specific number of pills at a specific dosage. The number will rarely exceed what you ask for, and asking for large numbers of pills is treated (not unreasonably) as a sign of drug seeking.

This is true in general, but as a doctor, I've never written a prescription for only 3 Xanax pills. Usually more like 10 to 30 depending on the situation. The only time I write for a single digit number of pills is for antibiotics, where I know ahead of time exactly how many pills they will need.

Anecdotally I’ve received a script for exactly 3 Xanax pills. The eye surgeon prescribed them for my LASIK surgery.

This is also common for dentists and other outpatient procedures.

>and asking for large numbers of pills is treated (not unreasonably) as a sign of drug seeking.

Something that keeps tripping me up with the label of drug seeking, is that in this situation the person is correctly drug seeking in a situation they've previously had a specific problem diagnosed and have had positive experiences with a therapeutic. They simply need to subject themselves to the ritual, follow doctor's orders, and not look like they are drug-seeking to successfully drug-seek the therapeutic.

What bother me is the implicit confusion between seeking drugs to treat a specific problem, versus not. Confusion creates damage both ways, with an insufficiently individualized approach people subject to drug addictions may not be sufficiently protected (many are still successful finding someone who will fuel their addiction), while people not subject to drug addiction receive substandard care.

> the person is correctly drug seeking in a situation they've previously had a specific problem diagnosed and have had positive experiences with a therapeutic

I've been in this situation a few times as I've moved around the US for both xanax (as needed) and adderall (daily) concurrently.

The short of it is this: you just have to find the right clinician.

Because of how the system works, you're not limited to psychiatrists. Pretty much anyone with a prescription pad can dispense these in month-sized quantities (primary care, psychiatrists, prescribing nurses, even dentists).

Call providers and tell them explicitly what prescription you need and that you're having trouble finding a doctor to work with you and it's frustrating. A lot of them will say "oh, this practice isn't what you're looking for" and eventually you'll find one that says yes.

Try to think of it as "patient advocacy" instead of "drug seeking behavior" while you're having conversations with professionals.

> both xanax (as needed) and adderall (daily) concurrently.

I'm not a doc but something about that combo activates my fear response... how would that even work?

I take adderall most weekdays because I need to be reliable and on a schedule for work, but I usually take weekends off.

I take xanax when I have to go do something that causes me a lot of anxiety but is required (family function, some doctor appointments, etc) and to mitigate panic attacks when I feel them starting (which thankfully hasn't happened in a long time). But I'm not usually on adderall for those events, so there's not much overlap for interaction.

I spent way too many years pretending everything was fine when my head was spinning with anxiety or when I couldn't get motivated for work. Eventually I just sorted out what drugs modulated me successfully, realized that I don't have an addiction problem, and now I've got a system for managing my life better.

Ah okay, that makes a lot more sense than when I read concurrent as 'together'. Glad you figured yourself out and I can imagine that must be a drag to keep organized at the doc... reform is definitely needed there.

You can order xanax on the darkweb, FYI.

I mostly agree with you - the problem is that doctors are trained to deal with the lowest common denominator of patient: an addictive idiot who would kill themselves with benzos or opiates, given the chance. 90% of doctors are absolutely not equipped to deal with high-agency, high-intelligence patients. I've had a few doctors that were smart enough to work with me on experimentation or nonstandard treatment, but they are few and far between.

You can also order fentanyl labeled as xanax on the darkweb...

DNMs have minimal issues with adulterated drugs, especially compared to street drugs. They typically have extensive third-party testing.

You can order unscheduled drugs from pharmacies in India like alldaychemist.com. That means no benzodiazepines, but there are drugs with off-label anxiolytic indications like hydroxyzine, propranolol, or clonidine to name a few. I don't disagree with you regarding our medical system.

Sorry to hear about the suffering you endure with your condition. Have you investigated any somatic work? How about psychedelics? Over the past 10+ years, I've gotten myself off a 200mg dose of Zoloft, along with Wellbutrin and Adderall through a combination of the above. I've seen others heal similarly.

Do you go to a different doctor every time, and is it a general doctor or a psychiatrist?

>I HATE the medical system.

A teeny nitpick, it's never the system, its always collectively the people, and common people at that. I have toyed with the idea of getting a medical degree but it's a lot of time, effort and money, to get over the issues you correctly pointed out, but it appears that searching and finding a doc that is disgruntled with the 'system' and who might be co-operative with things that I need is higher.

The tests can be ordered though a few online services. You pick the lab test, a doctor rubberstamps it and then go to Quest or LabCorp to get the blood draw. A few days later they send you the results. I don't think you can bill the insurer but the costs are not always that expensive for some of the common tests.

Do you have a regular doctor?

I'm in a simmilar situation and need a dose of Lorazepam about once or twice a year. However, I've never had the problem you describe. The first time I spoke to my primary care physician about this, we had a discussion about my options and I left the consultation with a prescription for a rather large dose of Lorazepam [0].

Since then, I've just called her office whenever I needed another dose, and told the receptionist that I was previously prescribed Lorazepam for X, and I need another dose because I will be doing X again. A couple of times, I also asked the receptionist to ask the doctor to lower the dose. I've never had any problem with this. I don't think my doctor has even asked to talk to me at all before putting in the prescription. (Although we have spoken about unrelated medical issues).

I assume that she just looked at my file; confirmed that she previously prescribed it and that I wasn't asking for it too frequently, then rubber stamped a new prescription.

On one occasion, I was speaking to a specialist (again, for an unrelated medical concern), and asked her for a prescription, because I happened to know I would be needing one soon. She glanced through my file and wrote the prescription without complaint.

I don't know what is going on behind the scenes, but I think what is happening is that I have a regular doctors office through which I coordinate all of my care. This means that whenever I speak with a doctor, they have a file on me that says "patient prescribed Lorazepam for X", so doctors seem willing to repeated what they have documentation about having worked before.

[0] Enough that she suggested I use a wheel-chair after taking it.

Could the ADA itself be the cause of at least some of this hesitation by some doctors to want to deal with disabled patients?

With a disabled patient, there's a larger chance that something about your medical practice (the parking lot, the hallway, the stairs and ramps, the chairs in the waiting room, the equipment in your office, etc) aren't going to satisfy somebody and you're faced with a dumb legal headache even though you might have been genuinely trying to satisfy everybody and would be willing to provide reasonable accommodation.

I just assumed that ADA requirements made their way into commercial building codes a while ago. And because of that, physicians would rarely bump into that issue, whether leasing office space or building new space.

Am I mistaken?

I believe that you are correct.

The doctor's office, as a business, already needs to abide by the ADA. It could be a convenience store, and still have the same requirements.

This is true but really doesn’t capture much of the truth. As a first approximation you can split spaces into licensed and unlicensed spaces. The former are the conventional purview of “private practice”. The latter are the typical purview of “hospitals”. These are in quotes because this is merely a correlation and neither concept has a strict definition. Critically without domain knowledge it’s unlikely you’d be able to tell which a “doctors office” is.

An unlicensed space is a business with all the usual obligations and the doctor is a doctor with all the usual obligations. When you move to the practice of medicine to a “hospital” (again as a licensing and finance idea which is separable from a sort of basic idea of building X) all that comes along but now with an additional regulatory overlay.

Big picture this doesn’t change much about the Ada except to say that many medical practices are happening in spaces where the Ada is just the beginning.

Unfortunately, it's not that simple.

ADA requirements are incredibly complex, at times very specific and at times very unclear and open to interpretation. The truth is that almost every building could be found to be in violation, no matter how hard the builders tried to make it ADA compliant.

In practice, this rarely matters. 99% of people with disabilities are just trying to get around, not looking for an opportunity to sue. But, the risk is still there, all it takes is one litigious individual to make your life a lot worse.

Usually it’s the building inspector that gets you because they have a different view of Ada code then you do.

This is covered in the article, and yes. Specifically:

> Physicians reported feeling overwhelmed by the demands of practicing medicine in general and the requirements of the Americans with Disabilities Act of 1990 specifically; in particular, they felt that they were inadequately reimbursed for accommodations.

It probably is but it's important to remember that without ADA this would be much worse. It's not like physicians were so great with people with disabilities before 1990.

The ADA is a definitely a case of great idea, terrible execution. Unfortunately, doctors (and really businesses in general) are forced into a no-win situation where as you stated you either comply in the fullest legally, or face a potential customer looking for a reason to sink your business. Where I live, the ADA is also responsible for some of the large increase in home prices over the last 20 years.

I wish it differentiated between necessary things like ramps, spots in a waiting area, etc, vs unnecessary things. There are just simply too many disabilities for even an honest, well intentioned business owner to keep up with. Of course, without retaining an insanely expensive lawyer.

What’s an example of an unnecessary thing?

I dunno, that's the point. Since it only technically requires "reasonable accommodation" it's up to interpretation. "Reasonable accommodation" has been used by ambulance chasers to sink businesses. I'm sure a set of absolutes could be codified.

I'm getting downvoted to death for having an opinion again so I'm just gonna leave the topic.

The ADA should have been the government providing disabled people with sufficient cash to purchase the services or products they need to address their disability, or the government can provide it directly.

But by diffusing the responsibility across businesses, the government can say they helped people without spending any money or taking responsibility to help people.

For example, why would a doctor need to arrange for translation or sign language services? If the government wants to give a disabled person those benefits, the government should pay the disabled person to purchase the services of a sign language interpreter, or provide them one directly.

How does a disabled person purchase a ramp or handrail for the building they are trying to enter?

They hire someone to carry them? They fund an insurance pool that allows them to dial a handy caretaker within distance when they need it? Maybe it's enough to fund stair-capable wheel chair robots. Who knows. Maybe they just call ahead, check, and then ask a friend or family member to go with them.

Lol, thanks. I haven't laughed this hard in a long time. What an absolutely terrible solution.

This is entirely ineffective, in fact that's what the government does in many countries including the U.S.

You cannot address the second-order effects of the lack of accessibility by throwing pennies at disabled people, unless you want to write them million dollar cheques. The problem can only be solved by giving them equal access to healthcare, education, employment and society in general, when you do this you allow them to become productive members of society who are self-sufficient. Giving someone a 1000$ in welfare every month is not going to help when they were prevented from going to school, finding a job, and getting out of their house at all.

Reasonable accommodation isn’t significantly onerous in the vast majority of cases. You don’t have to provide the accommodation a person wants. For example…

- Ordering via phone could be an acceptable accommodation for an inaccessible website. (Just don’t place the person on hold for half an hour.)

- Pen and paper can be used for communication when verbal communication isn’t possible.

- If someone is blind, you may be able to read things for them.

I’ll often get people still objecting to this level of accommodation because it is still inconvenient.

> If someone is blind, you may be able to read things for them.

You should see the look on the receptionist’s face when she has to, oh no, fill out the stupid overly repetitive paperwork doctors give their patients. The last time I did it I had to fill out my name and address like five different times.

> Reasonable accommodation isn’t significantly onerous in the vast majority of cases.

You are correct that a reasonable accommodation isn't particularly hard in many cases.

The disconnect in communication here is that you're thinking in terms of a reasonable person.

Unreasonable people exist.

There are unfortunately some disabled people that would refuse to be satisfied by almost anything you provide them. The ADA lawsuits don't magically vanish just because you try and be reasonable and they refuse to be satisfied in turn hoping for some payday.

The vast majority of disabled people are probably thankful for the accommodation, but it just takes 1 ambulance chasing jerk to pursue a dumb case that sinks a business.

One unreasonable person can ruin a lot of things. You’re never getting around that. I wish ADA wasn’t handled by lawsuits, but everything is the US is a fucking lawsuit…

The problem I have is many businesses don’t even try in the first place. They don’t know anything about ADA and point to the one unreasonable person as justification to do nothing.

There are far more businesses being “unreasonable” than there are people filing ADA lawsuits.

> The problem I have is many businesses don’t even try in the first place.

Is this perception accurate? I have my own life experience and thankfully do not have any disabilities that I know of, but it definitely doesn't seem this way to me.

For example, if a disabled person went into a restaurant and asked for a bigger seating area to accommodate their wheelchair or crutches or whatever, is there a restaurant out there that wouldn't try to rearrange the tables or move stuff around where possible? I'm using this example because I worked in different restaurants in the past and all of them were happy to carry tables up and down stairs to make space and even force other seated customers to move to ensure that anybody who wanted extra space was accommodated.

Not sure what else you want to see from stores.

You are correct that "reasonable accommodations" are, in fact, reasonable and don't have to be exactly what a disabled person asks for (though listening to people when they tell you what they need is important).

> Ordering via phone could be an acceptable accommodation for an inaccessible website

A particular person may find ordering by phone to be acceptable but in court cases, it has been found to not be equal to using an accessible website. One example is in the Domoino's case [0] (it references experiencing long hold times but there are other reasons it is unequal).

[0] https://www.lflegal.com/2021/06/dominos-june-2021/#A-phone-i...

Domoino’s had 45+ minute wait times. That’s what got them in trouble.

Phones are an acceptable alternative if you can provide equivalent service.

A screen reader user can read all the information in a decent online menu way faster than having a Domino's employee read it to them. A customer who is deafblind or is blind and has a speech disability would need to use a TTY relay service, which makes it even slower.

It is not unreasonable to make an ordering website accessible; Domino's even admitted it would only cost $58,000. $58K would be a lot if every individual restaurant in the country had to spend that much. Thankfully, that's not the case, most don't have an don't need their own bespoke ordering site, they license a platform.

> Where I live, the ADA is also responsible for some of the large increase in home prices over the last 20 years.

Where exactly are you getting this from?

Absolutely - the ADA makes it incredibly risky to deal with disabled people in any kind of formal interaction, so anyone who can avoid it rationally will do so.

Yes, since ADA mandates that accommodations must be provided at no cost to the patient (an unfunded mandate). Here is a tidbit from the article:

This is the problem - people reduce "ADA mandates" to "lol you had to install a ramp or elevator" but it's much more than that.

As a society we need to provide for those who are disabled, but we need more than just "lol pay for it" as a method. From one point of view a sign-language interpreter for someone who is deaf and cannot read is entirely a "reasonable accommodation" and from another (losing money on the transaction) it is not.

While there's no guarantee that every customer is "profitable" we should work to make sure that the "disabled" aren't always in that group. For example, the ramp is a one time cost and amortized over all customers forever, and so it's not noticed much. But the interpreter was - because there is nothing that disconnects the cost from the service. If instead there was a city-wide pool of translators and interpreters that can be summoned/scheduled, and the pool was paid for by a tax/fee across all interactions, then it would barely be noticed, and those who have to use it wouldn't feel like they got cheated.

Downvoted for directly answering the parent post's question and supplying a supporting reference to the posted article. Nice.

A lot of modern medicine is factory work, there is no time or interest for the patient. It's the same reason people with symptoms that aren't immediately obvious get diagnosed with anxiety.

It can be life-destroying when it's systemic, a lot of disabled people find that when they age out of pediatric care no one will touch them, not doctors, not physiotherapists, nobody.

Does this apply globally or just in the US? Do folks in other countries with disabilities have better experiences?

Same thing globally from the people I've talked to, I only have personal experience with American and European healthcare though.

A problem we have in Europe is that the regulation of medical professions prevents anyone from paying for better care. There were times in my life I would have paid any amount of money to see a professional but was unable to find anyone who could take my money. That means we all receive equal care but it's equally poor and the government doesn't put the necessary resources in place to improve it.

> There were times in my life I would have paid any amount of money to see a professional but was unable to find anyone who could take my money.

Isn't that when you fly to the Mayo Clinic and throw money at the silly Americans?

Can't fly if you're bed-ridden.

I am far from disabled but I have multiple chronic issues, one of them being 100% visible to the naked eye and I've been told by multiple doctors to "not stress about it".

And we're taking about a nail color change, a fingers temperature change during winter, and a constant feeling of headache that feels like worms are throwing a party under my hair (which they clearly don't).

Also, for what it's worth, I'm from Europe and I tried both the free and the private health sector in my country. My only other options are to fly abroad for "medical tourism", but that would require a lot of money.

> And we're taking about a nail color change, a fingers temperature change during winter

This sounds like pretty normal stuff...

I’m physically disabled and have various mental issues (ASD, ADHD, Bipolar, and some other minor things, all diagnosed).

In Australia I find our medical system to be incredibly supportive of disabled people as long as you don’t go to the “bottom of the barrel” doctors (eg local big medical centres). Those places are purely set up to churn people through for sickie notes or basic scripts. Every town has “family practice” GPs and even with me having moved all over the country I’ve always found them to be very accomodating.

Almost any appointment can be done over the phone or Telehealth (government video conference system) if I don’t feel I can make it in that day. Scripts can also be done like that then SMSed to my phone, or emailed direct to my local pharmacy who drop the medications off same day for free (paid by government). If I do have to go in physically to an appointment, they always have my full medical record thanks to our MyGov system and have a tl;dr on the screen when I go in, so I’m not wasting time going over everything again and again (which is how it worked before MyGov).

Overall I love our medical system. It’s absolutely not perfect but I’ve lived overseas in a few places and despite loving the idea of living overseas again (and having various serious issues with other aspects of this country) I stay here purely for the medical support I get with my conditions.

Keep in mind, if you follow economics, there is not enough money produced by working people to fund the growth of Medicare and NDIS. Not tax, even if they taxed everyone much much more, there will still not be enough money by 2027.

Our entire framework of accommodation is a mistake. If we wish for people—disabled, pregnant, whatever—to be subsidized we should collectively bear the costs. We shouldn’t insist that whoever they randomly come across be forced to eat those costs. That’s both unjust and a recipe for resentment, reluctant service, and hidden avoidance.

Some of the costs are "universal" (such as requiring all commercial buildings have wheelchair ramps) and so don't need to be "funded". Other costs are not universal and only appear when serving a customer/patient/person with the condition.

And we already handle the worst cases (where someone is disabled such that they need round-the-clock assistance, the state will hire said assistant; everyone expects Walmart to provide a handicap stall, nobody expects Walmart to change someone's diaper), so why not handle more?

Are you on team "collectively bear the costs" or team "remove accomodations?" Because one of the two parties always looks to cut government spending, and most voters don't care about the disabled. I'd vote for government rebates for accessible construction and services, but if you got rid of the mandate there'd be no accountability left, and the rebate program would get axed the next time Republicans want to pass a tax cut.

There is so much apathy towards the disabled. I had to take a lift to exit a parking garage in my wheelchair, which needed an attendant key. I called the number listed and the lady just told me "oh, it's broken, find another garage." But it wasn't broken. She just didn't want to come over and unlock the elevator for me. Her coworker finally helped me though, after much pleading.

I’ll be honest and say it depends. But for many things I am on team bear the costs collectively. I do want people in wheelchairs to be able to participate fully in the life of the nation.

I think the apathy you see is, in part, because companies are being forced to bear the cost. If every time you used a garage, the company got a check I think you’d see a different attitude.

Here in my country, to officially be recognized as a disabled person, you're required to undergo full medical examination every year (which can take weeks) and spend hours in lines to be reevaluated, otherwise your status will be revoked -- even if your defect is congenital and is not treatable (it's like they expect my bones to magically grow back one day). I've seen lots of people who can barely move be forced to stay in lines for reevaluation for up to 4 hours. I felt it's somewhat humiliating to be forced to prove you're still disabled like that so I stopped bothering. So thanks to our healthcare, a miracle happened and I'm not disabled anymore. I suspect they do it because their budgets are tight (we're talking about Eastern Europe) and they can't afford to pay benefits to everyone, but still the attitude is far from pleasant, it makes you feel like some kind of leech.

From the synopsis:

In the U.S., primary care is becoming more and more industrialized, with patients limited to very short visits. Patients hate this because they have real medical issues that need addressing; Physicians hate this because they want to help their patients solve their medical issues. This industrialization is particularly detrimental to anyone with chronic health concerns, anything that requires attention and thought.

Edit: Counterintuitively, the industrialization really has the potential to provide cheaper, better health outcomes for everyone. Unfortunately, it seems like “we’re not there yet” with what is possible with current tech, similar to self-driving cars.

It's not even remotely efficient industrialization though. Doctors spend a lot of time doing things that could easily be done by someone with much less training. Doctors would have more time to spend with patients that actually need their expertise if we had a better system for delegating tasks and triaging patients.

It kind of reminds me of how the medical industry in the US is more privatized than most places, yet pricing actually works in such an anti-capitalist way (even for elective/non-urgent procedures). They really manage to capture the worst of both worlds.

When you work out "who is responsible for mistakes" you start to realize why doctors wouldn't even want to delegate tasks.

My partner has a number of chronic medical conditions. In general dealing with doctors is a pain for various already cited reasons. One advantage of the American system is that, with the right insurance, you can book almost any specialist with no gate keeping. We've eventually found a few very helpful doctors who spend a lot of time with their patients. The general things that tie them together:

- Older (40+) so already made money and paid off their medical school loans.

- Their own small practice rather than part of a larger medical system or having partners.

- Negative reviews about long waiting times. If a patient needs more time then they spend it but that does make other patients have to wait.

Covid has been very helpful as more routine visits can now be done over the phone rather than having to go somewhere.

This applies for many things in general, if the only negative reviews are about wait times, you probably have a winner on your hands.

I have heard that person care providers that incentivize them to keep the medical costs per patient low, especially for HMOs. If there are doctors who are reluctant to have patients with disabilities, could metrics KPIs be in play here?

Almost certainly, and another reason to be very careful when implementing KPIs - I've seen setups where a customer being disabled would "turn off" the KPIs around patient care times, etc, just like how we don't time limit the SAT for people with difficulties.

I think anybody that saw the "pay to play" debacle with all of the medical journals at the turn of the century approach "medical and health (i call it healff, because they obviously got two "F's" in the subject) with realism and a bit of scepticism.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3702092/

"fabrication, falsification, and plagiarism" indicates the industry itself is beyond a crisis.

The comments/article show that a "for profit" system is everybody's problem, but even socialized healthcare does not provide even coverage for a long list of ailments.

The news coverage in Austrailia on Teo and neurosurgeons shows where disabilities as a plaything are equally as unethical.

https://www.news.com.au/lifestyle/health/neurosurgeon-charli...

The only recourse for disabled and ablebodied persons is to keep trying until you find a trained professional that can accomodate your specific needs (provided you can afford their services).

Perhaps people with disabilaties would be better served seeking healthcare at medical education facilities, where training/learning is still paramount versus the scar tissue already embeded in the system (not being paid for services from insurers, unreasonably low rates, etc).

This is yet another argument for the transition of American health care from a primarily private for-profit operation to a socialized medicine model. Compare to the British NHS, which takes this issue into consideration and devotes resources to it:

https://www.england.nhs.uk/2017/09/nhs-england-launches-prac...

Yes, you can still get privatized health care if you want to pay for it in Britain, you can hire a nurse and doctor to follow you around 24-7 if you can find any willing to do so at the rate you're willing to pay.

This was the thing that was so baffling to me about this study. I read the interview quotes, but then was baffled by the study's conclusion where they focused on things like "attitudes" and "structural barriers" (I kinda hate that term because it's easily interpreted in different ways).

Meanwhile I'm screaming "Duh, it's money!". Meaning that:

1. The study, for some reason seems reluctant to come out and say "treating those with disabilities costs more". Which seems pretty patently obvious when you read many parts of the rest of the study: they talk about needing more specialized equipment, needing to take additional time, etc.

2. Thus, in a private care system where reimbursements aren't changed for treating people with disabilities, there are tons of embedded incentives to not want to deal with those with disabilities.

The only was to get rid of these unwanted incentives is to fundamentally change the for-profit nature of American health care. Good luck with that.

>2. Thus, in a private care system where reimbursements aren't changed for treating people with disabilities, there are tons of embedded incentives to not want to deal with those with disabilities.

>The only was to get rid of these unwanted incentives is to fundamentally change the for-profit nature of American health care. Good luck with that.

As I understand, in the US, it is often the government itself that is not sufficiently reimbursing.

Yeah, there's a simple and probably not that expensive solution - anyone who is disabled (define it by SDI or whatever) automatically triggers an $X payment direct to the doctor/facility/hospital whenever they interact with them. Adjust X to be moderately above the costs.

Suddenly all the normies would be on the outside looking in as the doctors would be fighting over the disabled patients.

One low-hanging fruit to help the medical system is to replace/supplement GPs. GPs just route to a specialist, with some treatment short-circuits along the way. Sometimes you are forced through this pipeline for insurance reasons. There's a shortage of these doctors, at least in the US.

Create what WebMd should be: an actual working expert system. Take some modern medical textbooks and create a basic expert system. You can use ML for any imaging/sound/whatever needs, and you can schedule lab tests yourself. It might never be as good as a great GP, but how often do you have access to a great GP?

The idea behind a GP is supposed to be someone who knows you and your history, and can help recommend care, but they've been forced to become gatekeepers for the insurance system to reduce specialist use. The incentives are all sorts of misaligned.

How about maybe we decide we don't need people to slave away in medical school for a decade and go through residency in order for them to diagnose and treat patients? Is anyone stopping to think that the way we become doctors might be very stupid? We don't necessarily need tech to solve this problem.

Of course the whole system of becoming a doctor is screwed up (especially the match), but the chances that it will get fixed seem slim. I don't think we need tech to solve the problem in general - I think we need tech to solve the problem today.

Deaf people tend to be treated worse than average in Switzerland.

https://link.springer.com/chapter/10.1007/978-3-658-27120-6_... (English, paywalled)

Then there's her thesis in German, too.

https://en.wikipedia.org/wiki/Panspermia -- I have literally never had a doctor who was supportive of my disability, and when I finally sought out someone "queer friendly" they were more condescending and rude than most of the straight ones I'd interacted with. Purposefully unhelpful to the point I started reminding folks, why would you only kill yourself? These doctors might not harm you, but they'll purposefully avoid helping you, and that's the same.

(Maybe I should walk around Scott Township handing out fifty cent pieces so my opinion matters in 30 years like the local party officials used to in the park down the road from St Clair hospital -- I like how it's the same thing as if you hit a 21 in blackjack. I notice little things like that.)

Some of that is due to bouncing between insurances, so I clarified I'm eligible for an Italian passport to reduce the "Hi, I'm a shitty specialist but feel free to peruse a review website and pray to christ you don't have any meltdowns while I siphon up a few copays to pay for the degree I felt entitled because I refused to raise the minimum wage".

I hope it's coming through that while sometimes I can be intense in the comments section, if someone is so distrustful of the medical system they're considering emmigration it should be taken as an extreme signal.

But that's the problem -- no one ever has interacted with me like a victim or a peer in a medical context. I remember saying I wanted to be a horror writer and cautioned it might be better to stick to nonfiction when I was a teenager.

That's why I did things like point out when I turned 18 in February, I'd be legally able to buy an AR-15 during the 30 days it would take to try to evict me prior to graduation, because my parents were that kind of petty -- to this day they treat 911 like a customer service line... I had a cop bang on my door the other day because I hadn't called my mom.

(I tried telling them hey, I actually looked into being a domestic violence counselor, you need to stop coming here without a warrant, my mom is abusive and this is false concern but they just kind of ignored me -- the police, much like politicians, never actually seem to care what I say unless they agree, which is fine, but people tend to regret not listening to me.)

I hope for his safety he doesn't do that to someone with more severe anger issues, I've given up on trying to find a solution to that issue though -- I haven't had two weeks of quiet enjoyment of my home since Trump took office, and folks keep having increasingly terrible meltdowns when they fuck around and find out that I don't need to break the law to get them in line.

At this point, I'm debating if I should renew my medical marijuana card, since it seems like I'm just... rewarding a bunch of extortionists.

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