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We’re all just temporarily abled

blog.jim-nielsen.com

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Re: We’re all just temporarily abled

#401

Post by ianburrell »

Justsignedup wrote: post #233

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…

There are a lot of disabilities that are in the brain that can’t be helped with exercise.

Bit by tick and get Lyme disease. Get virus and get chronic fatigue syndrome. Get hit on head and get TBI. Don’t even know what causes fibromyalgia.

I have chronic vestibular migraine, which means dizziness and fatigue, but can work most days.

Re: We’re all just temporarily abled

#402

Post by ska »

concomitant wrote: post #372
jnovek wrote: post #295

Earlier quoted context omitted.

A bit of a tangent. 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…

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.

Re: We’re all just temporarily abled

#403

Post by WorldMaker »

SoftTalker wrote: post #354
mgkimsal wrote: post #347

Earlier quoted context omitted.

> 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…

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.)

Re: We’re all just temporarily abled

#404

Post by gfarah »

seanthemon wrote: post #5

My dad went from someone I can chat with every day about something or build something together to partially disabled due to first stroke and now unable to communicate fully or easily due to the second stroke at 65. He lost his job and sadly there are few things to help with those who are unable to communicate. This all happened over a single weekend.

Happened to my brother as well. Extremely fit and sharp guy. Had one stroke at his 31 years of age and another 6 months later.

I make sure to enjoy every day as much as possible now.

Re: We’re all just temporarily abled

#405

Post by notabee »

concomitant wrote: post #372
jnovek wrote: post #295

Earlier quoted context omitted.

A bit of a tangent. 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…

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.

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.)

Re: We’re all just temporarily abled

#406

Post by wsostt »

My first introduction to this concept was Tobin Sieber's book Disability Theory[0].

He referred to able-bodied people as TABs, Temporarily Able-Bodied. You are born a helpless infant and, if lucky, die a helpless elder.

> The cycle of life runs in actuality from disability to temporary ability back to disability, and that only if you are among the most fortunate.

[0] https://press.umich.edu/Books/D/Disability-Theory2

Re: We’re all just temporarily abled

#407

Post by wing-_-nuts »

cogman10 wrote: post #332
wing-_-nuts wrote: post #319

Earlier quoted context omitted.

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 r…

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.

Re: We’re all just temporarily abled

#408

Post by SilasX »

SoftTalker wrote: post #377
ryathal wrote: post #359

Earlier quoted context omitted.

It's been a while, but I'm not convinced there is a truly accessible date picker out there. Allowing manual typing of the date seems like the best and only viable option.

Also just typing the date manually is almost always faster than using a date picker. Or at least that's how I perceive it, which is all that matters. I hate apps that force me to take my hands off the keyboard and use the mouse.

Yep. They increasingly break addons that (try to) enable me to do everything from the keyboard.

Re: We’re all just temporarily abled

#409

Post by DiggyJohnson »

kerkeslager wrote: post #343
bryanrasmussen wrote: post #94

In terms of web UX, one disability that hardly anyone considers is intellectual disability - but really many people who work in development (design, project management, programming) are outliers in terms of intellectual ability (albeit probably not as much as they think they are) But we're all just temporarily smart as well, many people are not that bright before that first cup of coffee or if they are going through…

I friend of mine a few years back once said to me, "Some days ADHD is my most disabling condition." This is a person who often can't walk. I was properly medicated (with non-stimulant medication) for ADHD a few years ago and looking back to my life before that, I realize how much ADHD has negatively effected my life. And yet never along the way did anyone look at me with any sort of compassion. It was always seen as…

Out of curiosity, which non-stimulant medication did you have success with?

Re: We’re all just temporarily abled

#410

Post by no_wizard »

mjmahone17 wrote: post #330
cogman10 wrote: post #300

Earlier quoted context omitted.

Yup. 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 care…

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…

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

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