Aaron Winborn: Special Needs Trust
aaronwinborn.com
aaronwinborn.com
What matters is we can help. All of us — some of us (me) have been lucky enough to get help and support when we needed it most from people we didn’t expect it from.
We can help him; we can help his family. Even if only a little, and even though we know what the future will hold. So let's just do it.
Skip the squabbling over politics; national healthcare, etc. It doesn't matter - what matters is him and his family, right now.
This might be the straw for me. Fuck this place.
I'll take a few more negative votes for this comment, please...
But most poeple don't get my money.
Most also do not have a trust fund.
Then, I googled "programmers ALS" and found this study: http://aje.oxfordjournals.org/content/162/12/1146.abstract
It suggests that programmers do have higher risks. (Still, keep in mind that the study is small, and even if there are increased risks, the odds are still low.)
If I ever get something like this, or anything that eventually "locks-me-in", or something that destroys my mental faculties, I'm going to kill myself before the worst of it happens, around the time when I'm still able to do so. It's the only decent thing to do for yourself and the others around you.
Your opinion might be different.
Not all patients, of course. I just felt a need to respond to the 'decent' part of your comment. The only decent thing to do is what you think is right.
Anyway, its also relevant that most life insurance has a suicide clause.
EDIT: I do agree with you 100% though.
http://en.wikipedia.org/wiki/James_Heywood_(chief_executive) http://westcityfilms.com/smsf.html
http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth...
And to bring it back full circle to HN: Once original Basecamp sunsets, we think PatientsLikeMe has the oldest continuously-running Rails app; the oldest commits are from 2005, running Rails 0.5.
I wish we could take care of all the sick and elderly equally but such is life. Instead of blaming it on the government, the system, society or anyone else, I suggest we donate to the cause to help this man live as well as he can, while he still can.
Nobody deserves to be robbed of their life like this.
We can do both.
Government exists, in part, to share the costs of society among all its citizens. Roads, transit, military, and in most countries of the world, healthcare.
It's easy to say but I'm going to really try and keep a sense of perspective the next time I'm complaining about something.
Maybe this is a horrible thing to say but when I read something like that I just completely turn off. Religious fanatic sick? Their invisible space god can take care of them! I love how he put his stupid superstition not one, but two places ahead of being a father. That's really cute.
I donated to the Python programmer with ALS but I think I'll let Jesus help this guy.
As an atheist, I find your comment severely distasteful. I wish I could downvote this many times more than just once.
It does bring up the discussion of how people with low chances to live need $100,000s of care in the final months of their life. Must be tough to bankrupt yourself and your family that survives you knowing that there is not much you can do to avoid fate. But people myself included would do anything to survive just a few more months.
Edit: I'm glad you've dropped the threat nonsense.
Individuals shouldn't have to rely on popularity contests to be cared for when tragedy strikes: as a society we should care for everyone in the same situation. Charity, while good for the individual, is bad for society because it takes away from the importance of providing equally-available support.
Your hyperbole is rather baffling; I don't see the purpose behind it.
Not only is the US healthcare system broke and broken, but nobody in power is willing to imagine a solution that might work better (probably because such as system would require tackling the major corporate interests across the board, like big pharma) :-( I wouldn't be optimistic that we'll get things fixed.
The problem for some of us in the USA is that we have seen government health care run the USA way. I lived under IHS (Indian Health Service) for a big chunk of my life. They came about 6 hours from killing my Dad and my brothers records "disappeared" and he has a mis-diagnosed back. Google "don't get sick after june" for the typical problems. I myself had a botched root canal (3 surgeries afterwords) and lesser back problems.
Given this, I don't see how they can be more competent with more people under the system. If you cannot get it right for 1.2% of the population, you are not going to get it right for the rest.
That said, there are some things government could do that would help everyone. A "cataclysmic" insurance modeled on flood insurance to take care of costs over a certain dollar figure payed out of the taxes we already pay. Cut the cost of drug approval and work out longer term cheaper payments beyond the patent life. Tort reform for drug approved for the FDA. Scholarships for every nurse and doctor keeping a decent average. Reduce the cost of filling out government paperwork. Loans to needy individuals to pay their healthcare bill, payed back to the IRS.
I'm not very optimistic because I haven't heard any politician looking at what the actual input costs are for health care and trying to reduce those. They seem to accept health care costs will stay high.
If we just look at taxpayer dollars spent in the US on health care, we still outspend the rest of the world. If our government could control costs, they would have. States are powerless because a very large minority of expenditures are regulated primarily by the feds, and they actively avoid cost control outside IHS.
We have a system which is so structurally broken I just don't know what you can do without starting with huge structural changes, which would be scary to those on things like Medicare.
But that doesn't mean we can't look at what others are doing and try to fix things here.
Single payer works on a small scale by giving groups of people effective representation in collective bargaining, something that private insurance doesn't do. It also works by giving that same group collective bargaining regarding drugs and medical devices. It doesn't work by creating this huge insurance pool which is what we are told.
We could take the PPACA and change it, requiring that all insurers qualified under the plan are owned and operated by the insured, and then we could require compulsatory licensing of patents for medicines and medical devices.... And then we could take on the AMA's role in accrediting medical schools.
But pigs will fly first.
But for the US, if you sent things to the states, coverage could follow residency, and states could decide the level of coverage they wanted to provide (coverage varies significantly between Canadian provinces btw).
The big problem for the states is you can't do it as long as Medicare is fully federal and Medicaid is so heavily regulated by the federal government. You'd probably have to hand these programs to the states first.
Instead of editorializing, you should donate to the man's fund, or your local ALS Society - they do incredible work almost completely unappreciated by the broader public.
No. I left the country because of their health care system, and came to the US because of the health care my son would have access to.
In the first 2 weeks here, he had more care for autism then the entire length of time we were up in Canada (which included the more than year long struggle to get him diagnosed properly and get him help.
And he suffered for it. All because of Canada's, as well as Quebec's, health care policies.
I will not allow my son to suffer the way he suffered up there. That system, and the participants were, in short, abusive (and yes, I mean exactly that word).
I don't doubt that Canadian health care is fine for everyday needs, but pretending it will solve everyone's problems is ignoring reality.
If we block-granted the money for Medicare and Medicaid to states, they could choose to mimic the Canadian system with no tax increases, or they could choose to do something different. But what I really like about the Canadian system is that the control is localized. This is what gets me labelled as a right-winger for proposing it.
> However it's worth noting that they cover everyone for the equivalent of what we pay in the US for Medicare and Medicaid alone.
Everyone is covered, but not all medical conditions are covered. Yeah, if you break your leg, it's great. Having a child? Peace of cake. You don't even see a bill. Things just happen. In that way, it's nice. But when it's serious? No. Serious conditions that require years of effort, or major surgery? It falls down.
And the quality of care is below what we've found in the US.
It looks pretty on paper. My wife was a big fan of the Canadian Health Care system, before she had to rely on it. She feared the US system, until she experienced first hand how it could help.
No system is perfect, but do not imagine for a moment that the Canadian system is in any way a better way. I am serious when I equate what Quebec did to my son as nothing other than pure abuse.
You have some sort of a national commitment to fix the health care system. We can discuss the format of that national commitment and the role of the federal government (there would have to be some role particularly for the elderly who may retire somewhere other than where they worked). Then we leave it to the states to iron out the details.
That's what I want to see emulated. I think that most states will choose a single payer system like Canadas but probably with a bit more coverage. But states may try different things.
Two things I would like to see different though is that I would like to see less national government involvement than we see in Canada and even more local control. The federal government in the US should be there to address a few issues the states can't like folks from Minnisota retiring in Florida.
Yeah, that specific model doesn't work for Canada. It's a large part of why we left, and a large reason why my son was abused.
Letting the states handle it will be problematic. What happens then, when a state will not support certain procedures, but other states do? Following the Canadian model, your screwed if you live in the wrong state.
Sure, you can move, but then that becomes another issue entirely. You'll have doctors leaving states to move to states that can provide more jobs. Quebec is suffering this, and the left over doctors are overworked, and offer less than stellar service. And yes, you can incentivize staying all you want, and it won't happen. Or you might require they work X years in the state if they accept some funding for schooling, but then they'll leave when they can for better jobs elsewhere.
I'm sorry, but I've had to deal first hand with this model and the specific problems it causes, and I'll fight to prevent it from following me.
They do. People dismiss it, calling them the exceptions. The problem is, a lot of people in Canada can't simply come to the US to get care, nor do they realize they could.
Every time someone proposes Canada as a model, I trot out my story in the hopes someone will realize that their is a dark side.
No. Never again. It was no better than child abuse.
People who don't support health care for all need the outcome of their preferred policy position rubbed in their face as often as possible. And it's this: a man is begging over the internet for enough money to live his remaining years in what comfort he can, while hopefully destroying his family's future as little as possible. And what of the people who aren't drupal devs, or don't have an emotional connection with a community of people? They're just sol.
Click the one-time donation button. Then click the 'Continue' link where it says "Don't have a paypal account?"
Then complete your donation and you're done.
I'm kind of on the fence on long-term care insurance, though (independent of disability). It is dramatically more expensive, basically prepaid nursing care, and depends greatly on your assumptions about the cost of health care and general inflation.
http://webcache.googleusercontent.com/search?q=cache:BZM_fc5...
Actually, at this point I'd agree - I'd rather have immutable submitter-editorialized titles than editors butchering half the submissions.
Yep, exactly. I don't have a problem with editors fixing titles that are full of gratuitous spin or editorializing. But lately it seems that they're all but enforcing a policy of "every link must have the original page title and nothing else" and that's just silly.
Someone should try making a website like this, except use the upvotes and downvotes of its users to determine which titles and articles are worthy of being shown.
The new title reduces the information and context about the article by several orders of magnitude, which is a tragedy given the gravity of the situation.
To all who read this comment, please upvote the OP so that it stays on the front page longer and signals "must read" with its large number of upvotes.
This heavy-handed re-titling of HN posts has got to stop. If any incident can clearly demonstrate why, this is it.
If the moderator disliked the direct appeal for aid in the original headline (I speculate, since he has not deigned to defend his editing), a proper title would be something along the lines of "Drupal developer has ALS, appeals for help". If Winborn is better known, you could go with "Drupal developer Winborn has ALS, appeals for help". If he's very widely known, you can assume most readers know who he is and go with "Aaron Winborn has ALS, appeals for help".
This conveys all the information needed for readers to evaluate the link, without being a direct emotional appeal.
I'd be happy to give the HN moderators a class in editing if they like. Editing is a learnable skill. Or, more likely, the HN moderators can continue fucking it up.
The context the original title in the blog post is totally different from here on HN hence the desirability of a different title. It's just good UX to take into consideration the different end user.
# I think the problem is less with Hacker News but more with the authors of the original articles who are unable to write a decent topic for a posting. If an author is unable to communicate his message in the headline, it might be better to use another source.
# The fixing effect is in my opinion positive. The click baiting title rises up in the top news, but get reversed to some boring, non descriptive headline. It hopefully gets people curious why this news is in the top X and click on it. This has the effect that they are conditioned to read not always the most "screaming" headlines but also stories with weaker headlines.
# As an overall effect, the top news stories don't look like a shouting match where the scariest story wins. Instead it features also stories that have boring headlines and more a content over headline oriented approach.
Of cause this whole argument is somewhat arbitrary in your case, where a real life is at stake.
The author is writing a title appropriate for the location the article is posted at. That context may be critical and is missing once the article winds up on HN.
The fixing effect is in my opinion positive.
I would say it is net positive, but that doesn't mean there aren't cases that are significantly negative.
The top news stories don't look like a shouting match where the scariest story wins.
This is a false dichotomy. We can have sane editing of titles that give us context without leaving shouting matches.
Let's say I link to the editorial of the German news magazine DER SPIEGEL. In the context of DER SPIEGEL, the title "Editorial" makes sense.
On HN "Editorial" is pretty much a useless title.
Without a title like "Aaron Winborn (Drupal developer) - Special Needs Trust donations", I read the entire original story and a few of the comments before I realised that this must be someone known in a particular programming community.