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Aaron Winborn: Special Needs Trust
- s_henry_paulson 14y agoSadly before I even opened the article, I knew this was going to be the result of the lack of a proper healthcare system in the US. :(
- deleted 14y ago[deleted]
- fusiongyro 14y agoShut up and give this guy $10.
- dnlhoust 14y agoUnnecessarily rude. I suggest you think twice before posting again, Daniel.
- fusiongyro 14y agoThis guy needs our charity, not our political opinions.
- dnlhoust 14y agoGiven s_henry_paulson's sadness enough to comment, I'd say it's likely he has donated. Funnily enough I don't see why it's necessary for you to be outright rude to him. Edit: I'm glad you've dropped the threat nonsense.
- roguecoder 14y agoHe is planning on relying on both Medicare and Medicaid. He already has our political opinions, and thank goodness he does. 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.
- fusiongyro 14y agoIt's a reasonable argument, but he has problems that need solving now. If someone's hungry, you give them food; a philosophy lecture is not edible.
- roguecoder 14y agoActually, that's not what this sounds like at all. He's protecting his assets for his children and preparing so he can receive public assistance; he's not about to starve or be kicked out of his home or taken off life support or have to file for bankruptcy. He isn't even raising money for immediately necessary expenses; he is raising money for foreseeable care expenses in the future. Your hyperbole is rather baffling; I don't see the purpose behind it.
- einhverfr 14y agoWhy is it that when I suggest we emulate Canada's system (which is province-by-province single payer) the Democrats accuse me of being a Ron Paul right-winger (Nooo... not the States!) and the Republicans accuse me of being a socialist (Nooo... not single payer!)? 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.
- protomyth 14y agoProbably because it violates both their parties beliefs. 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.
- einhverfr 14y agoIHS is bad, but it's not just that though. As a way of controlling costs, Medicare is a dismal failure. This may be similar wrt IHS, but basically government health care means, in the US, underfunded doctors, and money channelled to large corporate interests, like big pharma. 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.
- deleted 14y ago[deleted]
- mindcrime 14y agoCould we skip the political discussion about this for now? HN really isn't "about" politics, and I have a feeling that the crowd here is just as divided as the general population when it comes to debating what should be done about healthcare. Us bickering about it here isn't likely to lead to any change, IMO.
- earl 14y agoNo, you're exactly wrong. 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.
- deleted 14y ago[deleted]
- ed209 14y agotext only cache http://webcache.googleusercontent.com/search?q=cache:BZM_fc59iG8J:aaronwinborn.com/blogs/aaron/special-needs-trust&hl=en&prmd=imvns&strip=1 http://webcache.googleusercontent.com/search?q=cache:BZM_fc5...
- agumonkey 14y agothe full version cache includes donation links http://webcache.googleusercontent.com/search?q=cache:BZM_fc59iG8J:aaronwinborn.com/blogs/aaron/special-needs-trust&hl=en&prmd=imvns&strip=0 http://webcache.googleusercontent.com/search?q=cache:BZM_fc5...
- moondowner 14y agoThere's no PayPal in my country (I use Google Checkout and Skrill). If there's an option to donate in a different way I'd do it asap!
- s_henry_paulson 14y agoYou don't need a paypal account. 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.
- vecinu 14y agoThis is really sad news and I will donate to his Trust fund but I can't help but feel strange knowing that I am donating to a fellow programmer. I see posts like these on Facebook and other collaboration sites and I rarely even bother reading the articles. 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.
- mcantelon 14y ago>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. We can do both.
- ericssmith 14y agoI'm a programmer and have two young children. I can't help but be moved to donate as it is relatively easy for me to see myself in his shoes.
- unreal37 14y agoWhat about people who are sick like this but are not famous programmers? Who will donate to them? 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.
- vecinu 14y agoThis is exactly what my point was about. Perhaps I didn't express myself properly.
- mindcrime 14y agoAnd here we go again with the title changes. Dude, whoever you are, would you please f%^#ng stop? This is not helping. Saying "Drupal Developer" clearly lets anybody reading this site know that the person in question is "one of us." Changing it now means that the only people who will pay attention are the ones who happen to know who Aaron Winborn is.
- vecinu 14y agoI think HN should implement the same restrictions as Reddit (Yes, I said it), nobody can change the title once the post has been submitted. This ensures consistency throughout the post's lifetime.
- cdr 14y agoSubmitters do occasionally badly editorialize titles so there is some need for editors to fix them, but of late there really has been an extremely overzealous HN editor or two at work. Actually, at this point I'd agree - I'd rather have immutable submitter-editorialized titles than editors butchering half the submissions.
- mindcrime 14y agoSubmitters do occasionally badly editorialize titles so there is some need for editors to fix them, but of late there really has been an extremely overzealous HN editor or two at work. 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.
- baddox 14y ago> Submitters do occasionally badly editorialize titles so there is some need for editors to fix them 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.
- unreal37 14y agoWhen the site is back up, I'll definitely donate as this is a terrible thing to happen to anyone. Not being able to hug your daughter or turn the pages of a book you are reading to her must be torture. 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.
- vy8vWJlco 14y agohttp://www.reuters.com/article/2011/03/16/us-vitamin-e-users-show-lower-als-risk-idUSTRE72F9B320110316 http://www.reuters.com/article/2011/03/16/us-vitamin-e-users... https://www.youtube.com/watch?v=qMYIJlmeSFM https://www.youtube.com/watch?v=qMYIJlmeSFM
- kiba 14y agoThis remind me of another programmer who got ALS: Hal_Finney
- mtraven 14y agoHackers may be interested in the story of Jaimie Heywood, who when his brother was diagnosed with ALS started his own garage-biotech company to try to find a cure. Sadly the brother died but the effort lives on and Jaimie went on to start PatientsLikeMe.com. http://en.wikipedia.org/wiki/James_Heywood_(chief_executive) http://en.wikipedia.org/wiki/James_Heywood_(chief_executive) http://westcityfilms.com/smsf.html http://westcityfilms.com/smsf.html
- jaylevitt 14y agoSee especially Jamie's TEDx talk. "Wouldn’t it be great if the technology we used to take care of ourselves was as good as the technology we use to make money?" http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired.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.
- ap22213 14y agoI've heard of several cases of programmers getting ALS. This seemed statistically unlikely, since the ALS site stated that only 5 in 100,000 acquired the disease. Then, I googled "programmers ALS" and found this study: http://aje.oxfordjournals.org/content/162/12/1146.abstract 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.)
- powertower 14y agoMore info on ALS: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001708/ http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001708/ 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.
- vkurup 14y agoMy opinion is similar, but... I've taken care of patients with ALS, and trying to figure out when you're in window of time between functional and nonfunctional is just about impossible. Not to mention that these patients and families have amazing capabilities to adapt to new realities, so as their function decreases, they adapt and thoughts of suicide seem ridiculous. 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.
- gms7777 14y agoWhat I think I would personally do wouldn't be too different. However, I think making statements like "It's the only decent thing to do for yourself and the others around you." is awfully harsh and judging to people who are actually in the situation. It seems to imply that they are somehow selfish by not ending their lives. Its important to remember that they are in the situation and you are not and therefore they have an understanding of their choices that you do not. Anyway, its also relevant that most life insurance has a suicide clause.
- gwillen 14y agoMy understanding is that voluntary withdrawal of artificial ventilation is not an uncommon choice for locked-in ALS sufferers, and does not count as 'suicide', but as 'death from ALS'. EDIT: I do agree with you 100% though.
- BHSPitMonkey 14y agoI doubt it's such a simple choice to make when you have a wife and two young daughters. Also, consider rephrasing to avoid categorically labeling all ALS patients as "indecent".
- jnoller 14y agoIt doesn’t matter what community he is part of, nor who he is. He’s a hacker, a father of two beautiful girls and a husband. He’s being robbed of his life, and his daughters robbed of their father. 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.
- nicksergeant 14y agoThe most thoughtful comment unfortunately buried underneath HN bull-fucking-shit (http://news.ycombinator.com/item?id=4229330 http://news.ycombinator.com/item?id=4229330) This might be the straw for me. Fuck this place.
- CharlieA 14y agoTo be fair, it looked (to me, anyway) to be out of genuine concern that the change to the title would reduce the interest of people on HN who could see the post and maybe help out Aaron.
- reneherse 14y agoHold on there. While it's certainly unfortunate that the top thread ended up as a debate of internal HN issues, there is within it a legitimate desire to help. When I saw that this was the intent of the parent, I posted in that thread so that anyone scanning the top of the page would regain the context needed to see the gravity of the original article.
- deleted 14y ago[deleted]
- nicksergeant 14y agoI stand by my comment, negative votes and all. I'll take a few more negative votes for this comment, please...
- masto 14y agoALS killed my father. He and the family went through a year of the most horrible, humiliating, painful torture I can imagine. Because he was (briefly) in the Army, we were able to get assistance from the VA. Without that and the support of the ALS Association, the cost would have been unbearable. The last thing Aaron and his family should have to worry about is how to pay for a wheelchair, remodeling their bathroom, lifts, in-home care, etc. I hope they get enough donations, but I also hope that the this country gets its act together so that you don't have to be a veteran or a well-known open source developer to have access to desperately needed medical care.
- benjaminwootton 14y agoI posted another sad story about a felow developer earlier today. This guy was going in for a double amputation today. http://twitter.com/iwarshak http://twitter.com/iwarshak 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.
- saturn 14y ago> Christian, husband, father, software developer. In that order. 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.
- jswinghammer 14y agoIn most churches the advice given to men and women in terms of prioritizing your life is: God, spouse, family, work. I realize that you think that his God isn't real but that really stops you from ever caring about someone? If your father had cancer and believed in God would you speak to him in this way? Why go through life being so harsh?
- nodemaker 14y ago>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.
- mst 14y agoIf it said "Human striving to be a good person, husband, father, software developer. In that order." would that make any difference to you? Because that's what all the moderate christians I know see their faith as meaning first of all.
- aaronwinborn 14y agoI think you may have mixed me up with someone else. I have never uttered those words in that order, in public or in private.
- j-b 14y agoI have two daughters of my own who are roughly the same age as Aaron's and it's crushing to think about how those girls will be affected by losing their Dad. Donated..
- shin_lao 14y agoI hope this guy won't have a problem with PayPal should his fundraiser work.
- socialist_coder 14y agoI thought this was going to be an article about "special" needing "trust", which seems like it might be interesting.
- rdl 14y agoDisability insurance seems like something everyone should get if they possibly can -- if you're an entrepreneur and often move jobs, it may be worth having personal coverage vs. relying on employers, since they change and may have inconsistent coverage. Probably the most important coverage after basic health insurance and auto coverage (if you drive). 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.
- JTxt 14y agoI met Aaron a couple years ago at a DrupalCamp media module sprint. He's been generous with his time and efforts to help others. I'm sad to see him struggle in his latest video. I hope the best for him and his family.
- aaronwinborn 14y agoI want to thank everyone for their ongoing support. I was surprised, pleased and humbled to find my post on Hacker News. I love the Open Source community, and am proud to be part of it.