How many people I know got hit by a car and had their life ruined horribly. Or a bad surgery. Things totally out of their control.
We need to see disability as a cost to society we must pay, not a failure of individuals which is more or less what were treating it.
The American disability system is basically proving (very painfully) that life is barely livable to get scraps of help. Like below poverty levels.
I really wish that we moved away from pain oriented policy - - how much pain are you willing to tolerate so we can get you basic assistance and into some sort of way to guarantee that people live an okay life as a default. My dream is to see this sometime in my lifetime.
I have a child with autism. The American system is cruel beyond imagination.
To qualify them for social security and Medicaid I have to leave them impoverished. They can't have more than $2k worth of assets in their name. Instead it's a complex lawyer game of trusts to give my child any sort of inheritance. Yet they are basically guaranteed to end up in a group home (Even though I own my own home) because a caretaker after I go is unlikely. Further, what the trust can pay for is things not covered by Medicare and SS. So housing and food are limited to what the government would pay for.
And then there's the concern of how this all plays out if I get dementia or disability which requires substantial finances.
There's a reason people with autism tend to end up homeless.
I feel like the biggest thing the US could do is remove means-testing from our disability aid programs. Means testing usually does not feel like an effective way to distribute services.
I want millionaires to be using government aid to help their children: just like with free education, when everyone who needs help uses it, the richer parents will demand, and ensure we pay for, higher quality for all. Everyone who is currently able to can all just pay a bit more in taxes to cover everyone’s accessibility and aid needs. I don’t want it to be possible for a child’s needs not to be met just because the state thinks the child’s family has too much money.
Aid services should be treated like sidewalks and fire departments: almost everyone is going to need them at some point, why would you want to make it difficult to access?
> I want millionaires to be using government aid to help their children: just like with free education, when everyone who needs help uses it, the richer parents will demand, and ensure we pay for, higher quality for all.
Beautifully summed up.
I don't want people to have to impoverish themselves, burning through entire life savings, to 'qualify' for small assistance. IME, it reinforces a 'why bother trying' attitude amongst people struggling on the lower end, and reinforces an 'I got mine, I'll protect it at all costs' attitude from people who've managed to save more.
Money saved from reducing means-testing from the administration of benefits/services might not be massive, but it would be a move towards "more efficiency", something many folks claim to value/support.
I don't really see that working. The rich might use the government benefits to the extent they exist, but they will always have the option of paying more privately, or buying additional private insurance, etc.
You see this every day in public school, where the more well-off families pay for math tutors or extra coaching or other out-of-school opportunities for their kids.
That's the point though. The rich already have all the benefits, plus more, but we also make the poor spend a lot of time, money, effort, and stress on "proving" they are poor to get the baseline benefits just so the rich "can't" use them (even though the truly rich have access to better and more services). If the rich already have plenty of access to stuff why are we forcing the poor to go through all these extra "proof" steps? Of course, rich people will cheat and take the 'free stuff" too (because they can, because many of them penny pinch too). So why not just make it for everyone and avoid all the tests and stress and administrative overhead of "prove you are poor to get this service"?
(A very similar thing applies to things like public school "free lunch" programs. The poor have to do a bunch of paperwork to qualify every year and lots of real poor people fall through the cracks of the system because they miss the paperwork or get some small detail wrong. The rich are generally going to pack better, healthier lunches anyway, so in some cases the time and cost of that paperwork would be better spent on "free lunch for all" programs, even if that means a few rich kids get free lunch sometimes.)
Unfortunately, the desire to soak the rich is a thing.
(A sentence that is not seen very often.)
Of course, the problem isn't really the rich. There aren't enough of them to strain the assistance budget even if they do all take the free lunch. The problem is the people who are richer than the ones who are eligible, but aren't actually rich. There are a lot more of them, and the money to give them all free things may just not exist.
> The problem is the people who are richer than the ones who are eligible, but aren't actually rich. There are a lot more of them, and the money to give them all free things may just not exist.
But it does though, because those are the people the existing system is screwing the most.
If you're all the way at the bottom, whatever the government provides is what you get because you have nothing else.
If you're all the way at the top, you have the resources to buy whatever the best of the best is.
But if you're in the middle, you can't afford to pay the taxes to fund public schools you don't use and pay for private schools, so you get stuck with public schools. And then we end up with this catastrophic districting system where you buy into a better public school system by spending more money on housing -- and making sure that there is more political support for keeping housing unaffordable because it's the way the middle class gets their kids into a better school district.
If you just give everyone the same amount of money, someone at the 40th percentile income doesn't have to massively overpay for a house, they can just add 20% more of their own money to send their kids to a better school. And someone at the 25th percentile income who is willing to sacrifice more for their kids can do the same thing, instead of having no path to do it at all because it would require them to get mortgage approval for a single family house in a suburban school district which is forbidden at their income level.
Given that children are our future, making sure all of them get a good healthy nutritious lunch behoovs us all. Even the not destitute, and not wealthy ones. If we have to have fewer stealth bombers and aircraft carriers to pay for that, then so be it. But of course trading one for another in order to be able to afford it makes sense if you think of the whole of the US economy as a one househole, with no control over monetary policy like the interest rate. Except it isn't. Look at how willingly spending is increased on military projects, and not the projects themselves. If we wanted to have the money to pay for it, we could.
It's just this idea that someone undeserving might get something for free. This makes sense for adults, but children, for whom we have laws preventing them from having jobs, can't have jobs.
Don't buy into the idea we don't have the money to pay for it, we do. Monetary policy allows us to create money out of thin air. If we treated this like the emergency it is, we could afford it. We don't do it for other reasons, but it's not a money thing.
> Of course, the problem isn't really the rich. There aren't enough of them to strain the assistance budget even if they do all take the free lunch. The problem is the people who are richer than the ones who are eligible, but aren't actually rich. There are a lot more of them
Welcome to the squeezed middle. Don't make enough to be truly comfortable but too much to be eligible for government assistance.
> and the money to give them all free things may just not exist.
Though if we had a functional legislature we could make this money exist simply by bumping the tax rate in the relevant income bands so that the extra expenditure is covered by the higher taxes.
Not to mention means testing can be used for discrimination
Growing up one thing I realized was white privilege, for lack of a better term, was my families access to welfare programs.
My father passed when I was young and my mom was left to raise us on our own. When he passed she made just barely above the poverty level, and you know what the government agent did? He fudged a couple things on the paper work and my mom got SSI and Medicaid for us until we turned 18.
I’ve heard the hell non white families go through in similar situations in my home state and I don’t imagine they got that privilege
At very least, it'd be nice if the means tests were tied to inflation rather than being increased based on congressional whims.
I'm certainly pro universal health care, it would GREATLY simplify mine and my son's life. Private insurance is simply garbage when it comes to services for people with disabilities. With that in place, a much simpler trust system would work for my kid. It wouldn't be this complex system of checks to make sure they stick in line with current legislation standards. I wouldn't have to spend a large chunk of my child's funds on lawyers and trust administrators just to ensure legal compliance. I could cover basically all my kids needs other than medical, that stuff is just too expensive for anyone to afford.
Exactly - universality is why Social Security and Medicare haven't been politically destroyed (yet) and remain the most popular public programs in the history of the US.
Means testing is not only inimical to the concept of shared benefits, but it's actually expensive to perform the means-testing. And some people who should qualify don't get the benefits.
> I feel like the biggest thing the US could do is remove means-testing from our disability aid programs. Means testing usually does not feel like an effective way to distribute services.
This was an argument for "libertarian" universal income.
Huge government edifice which exists to determine who, where, and how aid is distributed. Much glad-handing, acrimony, and inefficiency.
Just cut out the middle-man and cut everyone a check, or implement something like Richard Nixon almost did, the reverse income tax.
The issue with Univeral income is it's easy to dismantle or not fund.
Let's say we set the level at $1k per month for everyone. Great, until it's 2050 and that level is still $1k. Without inflation adjustments it eventually turns into giving people the equivalent of a penny, only now there aren't other safety nets in place.
But also, you'll have politicians saying "This is a huge cost to the government and everyone should just take care of themselves. So let's cut back the spending for people born in 2023". Just like they did with SS.
> The issue with Univeral income is it's easy to dismantle or not fund.
Completely the opposite. Because everyone gets it, lowering the funding requires you to fight everyone. The average income is moderately higher than median income, so the median person (i.e. the majority) receives more than they pay, even if it's funded with a flat tax. (Which also allows you to vastly simplify the tax system, because flat tax + UBI is progressive but requires much less privacy-invasive financial tracking than other forms of progressive taxation.)
> Let's say we set the level at $1k per month for everyone. Great, until it's 2050 and that level is still $1k.
So index it to inflation, or better yet, GDP per capita.
> But also, you'll have politicians saying "This is a huge cost to the government and everyone should just take care of themselves. So let's cut back the spending for people born in 2023". Just like they did with SS.
They only get away with that because the people born in 2023 wouldn't have received SS until ~2088, which doesn't concern their parents, and the infants are too young to put up any resistance.
With a UBI, everyone gets it, and then every parent will object that they're cutting funding for children.
>But also, you'll have politicians saying "This is a huge cost to the government and everyone should just take care of themselves. So let's cut back the spending for people born in 2023". Just like they did with SS.
Yes, one of the most important parts of making a healthy, empathetic, caring, and functional society is removing those people from office.
> I feel like the biggest thing the US could do is remove means-testing from our disability aid programs.
The problem isn't the means testing the problem is it's applied with broad strokes like all well meaning but inevitably awful government work. First, everyone pays into disability. So everyone should be able to get their share when necessary. Second, means testing includes things like housing, retirement accounts (which will be penalized severely if accessed), assets, and other things than just raw cash available. Just having a half decent computer is enough to make you fail means testing. So people who are on disability are almost universally forced to be poor. Don't try to hide your assets either. Shifting money/assets/etc to a family memory will still disqualify you.
In a practical sense we also need to prevent the exploitation of disability programs. For example, self-inflicted disability (morbid obesity for example) should be subject to a different test of means than birth defects. If you're only disabled because you eat too much and can't be bothered to exercise I question whether you're actually disabled. Every "class" of disability is not equal and so we shouldn't treat them exactly the same. But, like all things, because the government runs it disabilities must be treated this way and as a result everyone suffers.
Something my therapist pointed out to me is that obesity is directly linked to childhood and intergenerational trauma; calling it self-inflicted is not accurate. Even if we're focused on healthy eating, food deserts exist. No man is an island, &c.
Also, to cite an HN darling[0], obesity is, at the very least, a lot stranger and more complicated than CICO.
> we also need to prevent the exploitation of disability programs
What if we _encouraged_ the "exploitation" of disability programs? What if everyone who wanted or needed it got help, regardless of whether someone thinks they "deserve" it? What if people didn't have to worry about failing to re-prove they still need help? I would rather that myself & my disabled friends live in that world.
> Something my therapist pointed out to me is that obesity is directly linked to childhood and intergenerational trauma; calling it self-inflicted is not accurate. Even if we're focused on healthy eating, food deserts exist. No man is an island, &c.
The idea that obesity is self inflicted runs contrary to our current understanding not just of psychology but of physiology. Most people don't have a constant struggle to maintain a healthy weight generally people with obesity even if they lose weight have to work extremely hard to not regain that weight and most fail.
> The idea that obesity is self inflicted runs contrary to our current understanding not just of psychology but of physiology.
Eating your feelings (emotional eating) is commonplace. I'm saying it's a uniform cause, but common enough to pass the bar of "contrary to current understanding of psychology".
i'm late replying but i'd argue that emotional eating isn't entirely self inflicted. It's partially biological (our bodies naturally crave higher calorie foods during times of stress), partially down to learned behaviours that you may not be able to break without outside help.
> What if everyone who wanted or needed it got help
That's always the ideal surely. But there are at least some cases where simply providing people with material necessities and access to medical care etc. doesn't always feel like it's really helping them - I have one such friend, and while I genuinely sympathise with his very real mental illnesses, it's hard not to think sometimes the fact there's no expectation he will ever need to provide for himself at all might be part of what's stopping him turning his life around.
Controlling the motion of your hand to your mouth is entirely within the powers of even amoeba. No one forced you to eat yourself to death.
It's strange how we are so tolerant of the obese but alcoholics who climb into a bottle because of PTSD are considered derelicts. "Healthy at any size" has been the most effective form of long term population control.
> For example, self-inflicted disability (morbid obesity for example) should be subject to a different test of means than birth defects.
I don't really agree with this.
First, I don't see "abuse" of the system being a major problem that needs to be defended against. If someone wants to destroy their future health by Homering, let 'em. They aren't extending their life by eating themselves to death.
But even if that's the concern, I'm pretty sure we could circumvent a lot of those issues simply by subsidizing disability causing conditions (such as building/maintaining public gyms). We can prevent people from getting there in the first place which would greatly reduce the problem of "abuse".
Strong means tests are expensive to run and ultimately will filter out people that actually need assistance. If we are going to apply a social filter, I'd rather side with letting those that don't deserve it in than keeping those that deserve it out.
This is born out with homelessness studies. Applying sobriety or religious tests before sheltering the homeless ultimately keeps people homeless. Housing first, on the other hand, has a tendency to make people sober.
The dreaded “welfare queen” trope has cost so many lives, so much misery. We’d rather countless needy people suffer than dare give someone else more than he/she is due.
Yup. I support expensive social programs with minimal means testing. I'd rather give every kid a school lunch on my tax dime than have kids go hungry because their parents weren't poor enough to get a free meal. The wealthy kids parents are already subsidizing meals so why not let them have a free meal as well?
It's silly to bill people twice for the same product to make sure the underserved aren't accidently helped.
> First, I don't see "abuse" of the system being a major problem that needs to be defended against. If someone wants to destroy their future health by Homering, let 'em. They aren't extending their life by eating themselves to death.
Absolutely. No one should have to pay for it, though.
> If you're only disabled because you eat too much and can't be bothered to exercise I question whether you're actually disabled.
Okay... how do you then prove this? Is preexisting medical issues considered legitimate? What about medication changes? What about [insert any of many possible causes]? What if you have one of those causes but are missing one piece of paperwork to prove it? What if what if what if? I worry that trying to put legitimacy tests on disability just leads to "you're not disabled enough to deserve health" the way it does now.
> If you're only disabled because you eat too much and can't be bothered to exercise I question whether you're actually disabled.
Perhaps there's a distinction between chronic/permanent disabilities and transient disabilities? If I'm obese to the point where I can't walk, I am, indeed, disabled, but don't necessarily have to be for the next 20 years. Diet/exercise/surgery/etc could all reduce the obesity, but in the immediate 'now', I'm disabled and need assistance.
The point of government assistance isn't to make everyone the same, it's to provide a baseline. Someone in such a poor state that they can't work at all still gets a roof over their head.
Someone else can use the money to go to college or start a business, and society has an interest in promoting that because it yields returns. There is even an argument for investing more in people with more potential.
But in both cases the government is terrible at doing the evaluation as a result of politics and bureaucracy, so the right answer is for everyone to get the same.
You should also look into an able account. Your son can have up to 100k in assets invested in what's basically a 529 for people with disabilities. It can go towards housing and food. Get them on snap as well. Every little bit helps.
They aren't very old, so whether or not an able account is a good idea will depend on if they can manage money as an adult.
The issue with able accounts is they are under the sole control of the account holder with few checks in place. Further, crossing that 100k line really sucks. If they let the funds ride and they appreciate past that level, they can lose their qualifications for Medicare/SS.
For now, there's no rush, but it's something I've considered.
If they're unable to manage it themselves, they'd need to have it managed by someone with power of attorney. That can probably be the manager of the SNT if you have one of those as well. Actually the SNT trustee can probably transfer funds from the SNT to the able account as needed. I'm not a lawyer, so it'd probably be good to talk to one about this.
Right, but what happens when I die and there's 90k in the account? In 2->5 years, you'll need to start rolling money into the SNT, yet the only person that can do that is my kid. What if they don't have the wherewithal to know they have to do that?
Able works if my kid can make ok financial decisions. It's a bad idea if they can't.
I didn't say I'm not preparing things. I'm saying an able account isn't a slam dunk.
An able account, if mismanaged, can disqualify my kid from Medicare. That means costly and time consuming legal intervention to correct while my kid misses out on medical care they need.
The third option is waiting on the able account (not the SNT). There's little harm in waiting.
If you don't know already, go look up ABLE accounts. If your child became disabled before the age of 26, they can create an ABLE account and keep much, much more money in their ABLE account than they would otherwise be allowed to keep. ABLE account funds can be used for living expenses that cover the majority of expenses for most people- housing, healthcare, transportation, etc.
I'm aware. My kid is severe and whether or not that is a good idea is something I'll have to wait on. They aren't far enough along to really make the call on setting one up.
This seems like a lot of work that still leaves your child at the mercy of the American system. Have you considered acquiring a second passport for your child somewhere with better social policies? If you have the capital to setup a meaningful trust fund many CBI programs should be within reach.
> Single Applicant for Nursing Home Care
Idaho seniors must be financially and medically eligible for long-term care Medicaid. They must have limited income, limited assets, and a medical need for care. A single individual applying for Nursing Home Medicaid in 2023 in ID must meet the following criteria: 1) Have income under $2,762 / month 2) Have assets under $2,000 3) Require the level of care provided in a nursing home facility.
>The American disability system is basically proving (very painfully) that life is barely livable to get scraps of help. Like below poverty levels.
Yep, SSI disability is a system designed to keep you in poverty. The current max benefit is a little more than $900 / mo. That's basically unlivable unless you also happen to have section 8 housing, which when I asked, had such a huge waitlist it was unusable. $900 / month is certainly not enough to have any sort of dignified life. It's a grim existence punctuated by constant worry over every purchase.
I was on it from 18 to my mid 20's. Thankfully voc rehab helped me scrounge enough grants and scholarships together to pay for me to get a CS degree in '08. I've done quite well for myself since, but it's been a long road.
Also, the second you have slightly more than pocket cash to your name, all your disability and SSI type benefits go away. You cannot work yourself out of disability, because getting a job that can't exclusively pay for all your needs will still kill your benefits, leaving you worse off than the horrid poverty of exclusively relying on the government.
So many people in America who are on government benefits for life would LOVE to work odd jobs or part time and contribute to the economy and buy like an xbox or something but they cannot, because they would then be kicked out of their housing program. It's absurd.
Then these people on fixed, abysmal incomes are preyed upon by an entire industry who exists to skim off fees from the poor for everything from cashing checks, to hounding them for debts, to things like Dollar Tree where you can pay double the unit rate to buy a small portion of a normal product.
Mostly agreed on all of this. The only real way out for people on SSI, based on my experience, is to get a degree in a field where your disability doesn't hold you back. For me, this was computer science.
However, I'm not about to go tell everyone on SSI the way out of that poverty trap is to simply 'learn to code'. I'm fully aware that 'learning to code' isn't even an option for most of the able bodied population, much less those dealing with disabilities.
I simply don't hold out much hope that governments will ever allow those 'on disability' to live a dignified life.
The majority of disabled people would much rather work a significant amount, but employers will turn away a hundred willing disabled employees over spending even ten bucks on accommodating their disability. I have a dwarf friend (his preferred terminology) who has a chemistry degree, and had to interview at fifty different places, including ten interviews at the same place where many of the managers knew him by name and wanted to hire him, before he finally got a job. This insanity included a previous place that he interviewed at that explicitly told another company not to hire him because he requires accommodation.
That accommodation? A fucking tall stool for the lab bench.
Yeah I have cerebral palsy. My one request for accommodation is that I be allowed to 'whiteboard' seated with pen and paper. This is often ignored. In the past, I didn't push the issue until I found myself solving a hard problem at a whiteboard in front of a panel of 7 people who peppered me with questions for the better part of an hour. Stress makes my spasticity worse, so by the end I was literally shaking. Afterward they provided feedback to the recruiter that while my solution worked, I didn't seem confident enough or cool under pressure.
These days, I've done well enough for myself that I can push back. Remote interviews are especially nice. My current boss didn't even know I had a disability until we met in person months after I started.
>to things like Dollar Tree where you can pay double the unit rate to buy a small portion of a normal product.
It seems like you're implying that Dollar Tree is unethical for putting forward an investment in order to take advantage of economies of scale and then paying for overhead, shipping, and retail space to sell their goods at a profit.
What do you propose as an alternative to this? Should these goods be taken from those who are able to produce them at a wage set by the government and then distributed to those who need them, as prescribed by SSI, after nationalizing Dollar Tree and its ilk? How will the amount that the producers are owed for their labor be determined, or does this even matter?
Or maybe if this kind of discount store is immoral, maybe it should be banned. Are you suggesting that the customers of Dollar Tree would be better off if they simply went without whatever wares Dollar Tree has? Or that individual consumers should somehow gain access to the economies of scale that arise with being able to afford, eg, an entire container ship full of junk coming from east Asia?
It is possible to think something sucks without thinking it needs to be regulated away with force.
In the best possible world, their niche would not exist (would not be profitable) because they would have no target market, because everyone would be able to acquire basic necessities at regular grocery/big-box stores. A UBI scheme is far more productive in achieving that world then either of the (likely facetiously suggested) ideas you mentioned.
The Canadian system for disability isn't much better... about the same. I grew up as a child of a single parent who was physically disabled and unable to work. I had to hold a job down on top of school from the beginning of high school onward. My grades suffered terribly and I couldn't get into university. My parent has been dependent on us our whole lives since then: poverty is forced on people in these situations and it becomes a vicious cycle.
The Canadian system has been systematically dismantled by the conservative movements for decades. Long term care was privatized and has been in a slow decline. I've been writing our ministers here for years urging them with solutions to fix the system. Meanwhile my Nan in her 90's, living with Type 1 diabetes, had to go hungry during the pandemic when they couldn't get workers who understood her dietary needs to prepare food she could actually eat. It's been a huge drain on her health in these years of her life and has left a terrible mark.
Definitely worth advocating for and joining movements to push for social programs and human rights. When everyone's quality of life improves so many other things are raised up with it.
It's not even pain-oriented. It's visibility-oriented.
I deal with chronic migraine and it's extremely difficult to get on SSDI for that disorder (unless it is secondary to something more visible, like a TBI). Other invisible chronic pain conditions (e.g. fibromyalgia) are similarly dismissed.
Or diagnosed as something they clearly are not, like depression. There are doctors who are willing and interested in doing the necessary investigative work to figure out what is going on, but they are an extremely small minority.
My experience suggests that the transactional nature of modern medicine is part of what makes these types of investigations so hard. A doctor will be booked solid all day without time to reflect or investigate and that really only works with one-off problems.
A chronic condition is not transactional, it's narrative. Someone needs to manage that narrative and mine it for insights. The only way the American medicine system was eventually able to help me was after I started managing my own narrative, but that has challenges for most people -- especially when experiencing reduced functionality due to disability.
This is a very concise way to put it. And what's worse is that if you do try to take the narrative into your own hands and bring the whole story into appointments, there's a fair chunk of those doctors that will take offense at you trying to lead the conversation or decide that all that effort is evidence of some sort of malingering disorder. Even with lots of effort and information organization, it's still often a damned if you do, damned if you don't sort of thing.
> My experience suggests that the transactional nature of modern medicine is part of what makes these types of investigations so hard. A doctor will be booked solid all day without time to reflect or investigate and that really only works with one-off problems.
I'd argue that has more to do with the sheer number of variables and our limited understanding of how they interact.
Patient resilience is also a factor. Few have the resources to eliminate all possibilities at their own expense while accepting the risk of having nothing to show for it. The opposite end of the spectrum are people who show up expecting to walk out with Vicodin and SSDI after the initial consultation.
Using chronic migraines as an example, that shit is a response to something-- and it may not even be medical in origin. Worst case: if you're a diabetic homebody living with six cats' dirty litter boxes, have mold in your basement and bats shitting in your attic, drink no water, smoke meth and eat only takeout Chinese food, any single one (or combination) of these could cause chronic migraines, and are far from being the only causes. Stipends and Oxy won't fix any of this.
Doctors are not investigators. They are scientists. Trained investigators are presumed unqualified to "manage that narrative and mine it for insights" because they are not Doctors (credentialism/"you're not a doctor" is literally the response any disability attorney would suggest you raise against skeptics, failing to notice the irony in a non-doctor attorney/client team touting the validity of a self-authored medical narrative).
> chronic migraines as an example, that shit is a response to something
Sort of. I think the _chronic_ aspect of chronic migraine often ends up being a response to something, but migraine itself is considered a primary condition.
In my case, I respond to many stimuli that are out of my control or hard to control all the time — weather, seasonal allergies and stress to name a few. I also have stimuli that I can control, and by controlling those I reduce the impact to those things I can’t control.
FWIW, I’m not shitting on doctors, here. I actually think that there is some evolution of our medical system that takes the narrative into account, perhaps by process or an intermediary that helps a patient manage their “case”.
I’m not sure transactional is the right word. The problem you are identifying is physician bandwidth, or more fundamentally, insufficient physician supply to meet medical demand, which leads to lower quality care.
That doesn't sound quite right to me. There is a lack of physicians, especially family/general, which makes everything harder.
But that doesn't nearly account for everything. It is also true that the system is set up very transactionally, and that this makes it difficult to address many chronic issues as well as they could be.
If you are lucky, you have an involved general practitioner who has a long history with you, good notes, and time to get into difficult analysis. For many people currently this is a pipe dream. Hell, many people are reliant on ER for basic care - a system that is fundamentally incompatible with this sort of baseline and evaluation.
There are problems beyond just supply and demand. The reason in my experience that someone might use the term transactional is that at any given appointment, most doctors will only choose to focus on one or two topics or concerns. And generally, to get any sort of treatment option for those they'll need some sort of code for insurance to reimburse for the visit. This is especially true for specialists, whom if you visit enough doctors you'll realize push procedures or specialized tests very heavily because that's what makes money. In the current system every single aspect of medical care must have a price tag attached, must be composed of transactions and codes, or the doctors won't get paid. When the concept of "what is the diagnosis" implicitly morphs into "what is the billing code", medical care becomes a fractured and transactional experience rather than a holistic assessment. (And for any doctors reading this, I know that "holistic" is one of those quack trigger words, but those quacks are responding to an unmet need even if their treatments and diagnoses are pure bunkum.)
I think you’re absolutely right that that physician bandwidth is the cause, I think you could characterize the transactional medical experience as a side effect of that problem.
When I say transactional, I mean that each interaction has a cause (“what brings you in today?”) and an action (“try this medication”, “see this specialist”); each visit is like a full story arc from start to finish.
Compare that to psychotherapy where each visit is more like a continuation of the previous session — a narrative. IMO, people who suffer from chronic conditions would benefit from a model that draws on the narrative aspect of therapy.
Off-topic, but have you tried a CGRP Inhibitor? That's a newish class of drugs specifically developed for migraine. Aimovig has been game changing for me.
Like many folks with chronic migraine, though, my approach has multiple facets.
Emgality is part of my management strategy and it significantly improved my total number of headache days per month. It got me to the point where I could start realistically making some lifestyle changes that helped as well.
Botox has also been great. It seems to do less for total number of headache days but it does a lot of duration and intensity. Many days I’m functioning even though I’m dealing with some pain in the background.
It’s not perfect but it’s still a much better place than I was before. :-)
My fiance had intercranial hypertension. Which is a complex way of saying "we don't know the root cause of why your spinal fluid is causing so much pressure in your head that you want to take a ice pick and poke a hole in it!" which also decreases EVERYTHING due to brain pressure, so more tired, less ability to think, less sensitive to all senses, less emotional control (especially because you're in constant pain / fear of sudden motions causing a lot of pain).
Hard to explain to people that she's not just lazy. Thankfully a relatively easy procedure helped and now she's on the road to a slow recovery.
Edit: Maybe it is just empathy. It is hard to see my tax money going towards turning brown kids into skeletons, and not making people who's life already sucks suck a lot less.
Hi, this was enlightening. I'm a dude who has IIH myself for now almost half a decade and I was at no point told this could reduce my cognitive abilities. I take Diamox just in case (to reduce the intracranial fluid).
It was a heering experience to get this diagnosed. One day all of a sudden my head started hurting and didn't stop, for months. But I had no other symptoms so doctors didn't take me seriously and my neurologist appointment was several months AFTER the onset of the symptoms (yes, months!).
That was until I accidentally went to an ER ophthalmologist who saw my optic eye nerves and went holy smokes. I went through so much pain. All of this at a very young age. I developed severe anxiety and depression.
I haven't done well academically speaking compared to my peers. I feel shitty about this everyday, since all of my friends are better off than me.
I'm on HN but not in IT (I am inept at programming, tried several times, I am just not capable of it), but various friends of mine are in IT and make 5x my salary and it makes me feel worthless, because they enjoy life at a different level than I do because of their income. Nicer homes, cars, stability in finances, etc... It makes me feel like I'm just not worthy of life because hey, if they can make it, why can't I? I am supposidly as capable as they are... right?
Thank you for making me aware I have an illness that can make me a bit less capable compared to my peers.
I'm going to use this to be less harsh on myself and hopefuly find something in which I find myself better off one day within my own limitations.
> It makes me feel like I'm just not worthy for life because hey, if they can make it, why can't I?
Honestly though, nobody should have to earn a decent living, regardless of level of ability. They're alive, and not by choice, so they should be able to enjoy it. Meritocracy is just cruelty when extended to the conditions of one's life - we want those with the fewest intrinsic resources be made to suffer? I don't.
"We should do away with the absolutely specious notion that everybody has to earn a living. It is a fact today that one in ten thousand of us can make a technological breakthrough capable of supporting all the rest. The youth of today are absolutely right in recognizing this nonsense of earning a living. We keep inventing jobs because of this false idea that everybody has to be employed at some kind of drudgery because, according to Malthusian Darwinian theory he must justify his right to exist. So we have inspectors of inspectors and people making instruments for inspectors to inspect inspectors. The true business of people should be to go back to school and think about whatever it was they were thinking about before somebody came along and told them they had to earn a living." - Buckminster Fuller
I've never liked that quote because without context the criticism of inspectors and their tools sounds foolish to me. Inspectors generally serve an extremely useful role, I think the friction is that they're people. I compare them to a linter. We should probably have more inspectors unless AI can do it more easily, because capitalists will cut corners, risking the health and lives of others, at basically any opportunity.
I don't think the quote was a specific dig against Inspection-related professions, but more a criticism of make-work (or so-called bullshit) jobs. Maybe a more modern version of the quote would replace "inspectors" with "administrators".
This element of our society being so stingy with our bottom economic half hurts everyone as that half spend their money quickly and locally. The cutting taxes of the wealthy since "they'll invest more in 'creating jobs' and grow the economy" hasn't worked. That 'investment' went mostly to sweatshops in other countries. This is compounded with other draining tax breaks lije carried interest and the scam where corps by their own shares at a tax advantaged situation. The middle class has shrunk and standards of living have declined for I'd guess 2/3 or more of Americans.
I've had something so very similar. At one point I started having a lot of 'pressure' headaches after coming of Zoloft. It lasted for about 4 months. Just constant throbbing pain in the temples, and prevented me from doing critical thinking or working on my software projects. It was a horrible brain fog that basically crippled me mentally. I could do physical labor fine, but anything requiring me to use mental skill just left me sitting there like I was brain dead.
After 4 months I went to the ER, got a MRI scan, went to a neurologist, and none of them could figure it out other than say it's because of anxiety.
They put me on some blood pressure medication, and it seemed to mostly go away over a few months. I still have some headaches with the same type of pain but not lasting all day.
I am not really in IT either, although for a few years I worked for a software company (as customer support, not programming or engineering). I've only ever posted 2 things here, and they were things I was sharing, not my own writing:
In 2013 I was in a very serious motorcycle accident (coma for 1 month, 2 broken legs, broken hip, broken left arm, several broken ribs, collapsed lung, multiple skull fractures, inner ear bones damaged on both sides. My brain damage was such that my short-term memory was basically zero for a long time, as well as damaged nerves that control vision. The road to recovery was/is long, I still have what are referred to in the medical world as "sequelae", which just means "ongoing effects or symptoms", but, long-story-short, I really, really, really believe that we can all improve our lives and our brains if we A: want to, and B: try. I highly, highly recommend the book "Atomic Habits" by James Clear: https://www.thriftbooks.com/w/atomic-habits-an-easy--proven-...
And Jordan Peterson's books "Maps of Meaning" and "12 Rules for Life" were pretty life-changing.
Jordan Peterson has a LOT of really helpful content on YouTube (a lot of people don't like him bc I guess he's kind of "conservative", but I think it's more the case that he thinks postmodernism and "wokism" are detrimental to a healthy society.
> Which is a complex way of saying "we don't know the root cause of why [...]"
A thing a lot of people don't seem to be aware about modern medicine. We can treat many things, we know a whole lot more than we used to, but a lot of this knowledge is often incomplete. Many of the body's systems are very badly understood. Treatment for most of those issues is symptom management more than anything else.
This is true. We know experimentally that certain drugs are helpful for certain symptoms. In some cases we have some idea of why they work, but far more often than you might think, it's a case of "we know it works but really don't know why."
It's empathy, but also literally the smarter/cheaper/more humane way to do healthcare, free at point of service. An ounce of prevention vs a pound of cure.
what really makes me see red is the fact that how we do healthcare is worse, more expensive, and less helpful than were it given to all, and STILL, people vote against universal health care. The only benefit to our system as yet is its ability to enrich a few rent seeking billionaires in the middle of us and our doctors. But because crab in a bucket Billy Joe in rural kansas "don't wanna pay for sum un elses helfcare". Evil, stupid, individualistic self harming fucking animals we are in the US. Barbarians to let our citizens in the richest country in the world go bankrupt because they got sick. Evil.
Any system can be hacked, including empathy. We call it "fraud" and unfortunately it seems that the number of humans who can keep two concepts in their head at the same time are vanishingly rare. So you end up with a useless "empathy vs fraud" debate repeated endlessly, roughly corresponding to the left and the right, and it doesn't go anywhere. Of course, what we need is a synthesis. The left needs to be more attuned to fraud that targets empathy, and the right needs to stop using the risk of fraud as an excuse to do nothing.
Unfortunately, "risk of fraud" is a cover for the belief that giving their money to people who haven't worked as hard as they have is theft. Many want to decide who deserves their money more than themselves.
Being poor or disabled is effectively a character flaw.
Another example of the fundamental attribution error on the right. In the same way, many on the left believe that having money means that you've stolen it and don't deserve it. So it cuts both ways.
One side : use our immense wealth as the richest nation on earth to provide basic services to all citizens by maybe taxing billionaires so they only have 1/10 b instead of 100.
Other side: if you're poor, it's your fault. Get fucked.
Laughable you can consider those two positions in any way comparable or equitable. Absolutely silly the enlightened centrism I'm seeing here. Gross and dishonest to even pretend like there's more than one viable non ecology destroying, democracy preserving political position in the us.
Stop obsessing over what marxists think of profit, consider what they want to do with the wealth they redistribute. Make all our lives better for literally zero quality in life change for the rich who we'd tax. Tell me who's going to have any discernible decrease in quality of life if wealth was capped at 1b or 10 vs infinite and I'll call you a silly little child.
You highlight the difference between zealous advocacy and debate. The advocate cannot admit the flaws of their own position, or the merits of the other position. You characterize the left in a moderate way, and the right in an extremist way, even though extremism exists on both sides.
I miss the cultural norm that privileged debate over zealous advocacy, leaving the latter to lawyers and politicians.
>Zealous advocacy
is centrist handwaving that ignores material realities on the ground. Acting as if noting one side is reasonable with faults and the other are lunatics not fit to old office is empirical, here's some proof.
Side A are passing a 4% tax on millionaire's and passing universal school meals for kids. [0]
B are forcing 12 year olds to carry their rapists' child to term. [1]
You're mistaking empirical pragmatism with "zealous advocacy" because you've probably bought a little too much horseshoe theory nonsense or some other centrist silliness.
[0]https://www.npr.org/2023/08/18/1194424563/free-school-lunch-...
[1] https://theguardian.com/world/2023/aug/14/mississippi-aborti...
Please, tell me what extremism is there from the left outside of twitter??? Because I can list dozens of articles like [1] that the right are doing on the ground, right. now. Please, privileged debate away.
Sharing someone else's dream is empathy. Wanting people to be treated with dignity is just plain decency.
The issues the parent poster brings up are policy choices. I think it is good to believe people when they say they are suffering, but a better start is to vote for folks who are willing to treat people like people.
> We need to see disability as a cost to society we must pay, not a failure of individuals which is more or less what were treating it.
You frame this as a binary choice, but it's clearly both.
I understand the desire to destigmatize and focus on systemic problems. But I really hate when health issues are framed as only societal/systemic problems. Doing so is factually incorrect and worse, robs individuals of their sense of agency.
One of the main failure modes I see of progressivism (which I am otherwise happily a member of) is treating all problem's as society's fault. And then progressives wonnder why they feel so dispirited and defeated all the time. Maybe it's because we adopted a worldview that gives us no sense of agency over our own lives?
(Of course, one of the well known failure modes of conservatism is blaming individuals for everything.)
The right answer is that it's both. Like the serenity prayer says, do the stuff you can and accept the stuff you can't. Both are equally important.
> We need to see disability as a cost to society we must pay
Nonparticipating Product Hunting lifehacking hustlebros don't see things that way. They are the worst voters: they don't care about other people's problems and they don't care about problems that are even likely to affect them personally. They only care about the now.
ACA enabled nonparticipation. 18-26 year olds got insurance and checked out. Why do you think Republicans supported it? It got passed but it wasn't radical. That's the point.
> My dream is to see this sometime in my lifetime.
Make the radical thing happen by picking a side. If you feel strongly about this, align with something that activists have been advocating for for decades instead of "pain oriented policy" or something idiosyncratic like that. You have way more agency than you think.
We need to see disability as a cost to society we must pay, not a failure of individuals which is more or less what were treating it.
The American disability system is basically proving (very painfully) that life is barely livable to get scraps of help. Like below poverty levels.
I really wish that we moved away from pain oriented policy - - how much pain are you willing to tolerate so we can get you basic assistance and into some sort of way to guarantee that people live an okay life as a default. My dream is to see this sometime in my lifetime.