posted
Hello, Hatrack. I hope this is within the TOS. It is a purely charitable cause, so I think it would be okay.
This comes via author Neil Gaiman's blog (and thanks to another member here for showing me the link via her journal). He has posted a request to advertise a link for a young woman with Arnold-Chiari Malformation (a deformation of the brainstem) and no ongoing insurance.
Her details and the link can be found here -- the link & 2 mirror links are in the blue box on the left of the page. She is avoiding giving out her PayPal address for direct contributions, but she asks people to download a text file once daily. With 5 million downloads, she has been promised $10,000.
This should cover her first surgery and possibly more. She has been working with the local teaching hospital (OSHU is donating 100% of hospital services), and the neurosurgeon is donating his time at 50% rate. There are still other expenses, and she needs to put down 80% of the discounted amount. This will likely be in the range of $1500-$5000, depending on how extensive the surgery ends up being.
Caveat: As far as I know, you can't get a virus from downloading a text file, and it has not given my computer any problems. However, all you computer gurus, please let us know if this could cause problems.
----
Edited to add: I will flag this for Papa Moose to review, just in case it is out of line to post.
posted
If JT can plug his album release, I'm sure you can plug a charity.
Thanks for letting us know about this.
Re: Virus, this is from her site:
quote:First off, I don't know how to write a virus. Second, it has been debunked by someone with far more knowledge of these matters here. While a virus bad enough to wipe everyone's computers could be the same size of the text document I've uploaded, it is, as of now, not possible for a virus to be executed from a text file.
posted
I think she's doomed. By making this plea, she's clearly trying to "manipulate [her] results" -- which violates MegaUpload's TOS and thus gives them the right to ban her and refuse payment.
Posts: 37449 | Registered: May 1999
| IP: Logged |
posted
You're right, Tom, but by the time it becomes an issue I think the potential for a PR debacle will force them to let it slide.
Posts: 4313 | Registered: Sep 2004
| IP: Logged |
posted
Tom, according to her blog, she has already checked with them, and this use is okay. "Manipulating [her] results" seems to refer to using automated mass downloads.
Sure, they could probably weasel out if they wanted to, but I'm not sure that possibility outweighs the potential usefulness of doing the clicks for her.
---
Edited to add:
quote:Absolutely no fraud
You will be disqualified and banned if you try to manipulate the results. Automated mass downloads are easily detected and strictly forbidden.
And, like erosomniac, I think the PR mess would be a nightmare.
Posts: 14017 | Registered: May 2000
| IP: Logged |
posted
*nod* Heck, if I were in their position -- and my company's financial situation permitted it -- I'd donate another $15,000 to her and then rewrite my download rules so that only downloads by full members count towards the goal.
Posts: 37449 | Registered: May 1999
| IP: Logged |
posted
Why does MegaUpload offer money for downloads anyway? For advertising revenue, wouldn't they need click-throughs on the advertisements?
Posts: 14017 | Registered: May 2000
| IP: Logged |
quote:Originally posted by ClaudiaTherese: Why does MegaUpload offer money for downloads anyway? For advertising revenue, wouldn't they need click-throughs on the advertisements?
Not necessarily. A lot of advertising setups cost advertisers money for time in a space, regardless of click-throughs: this is a common setup on sites with very high traffic from unique visitors, like popular webcomics. The goal, therefore, is to create an environment with the desired traffic to generate the numbers that interest advertisers.
It's the same idea that powers sites like FreeRice, although I don't know for sure about that one specifically.
Posts: 4313 | Registered: Sep 2004
| IP: Logged |
posted
I downloaded it. Cases like Erin's are why we need single-payer national healthcare. Be sure to only download once/per day/per IP address.
Posts: 6316 | Registered: Jun 2003
| IP: Logged |
quote:Originally posted by Dead_Horse: She implies she has no income or assets. Why would she not be eligible for Medicaid?
quote:From Erin's FAQ, linked above: Two, one doctor, one specialist and one specialized surgeon have mandated I can't work. If I were to go against that mandate and find work regardless (which, I've been tempted to do, because I hate not having money of my own and constantly having to ask Matt for money for my medications and such), then DDS would automatically deny my SSI/SSDI appeal, which would mean it would have to go to court, which would take anywhere from 1-2 years.
Most people who go on Medicaid as adults get it through establishing SSI qualifications, for which her case is pending on appeal. The only persons assured of getting Medicaid in the US are those with established SSI eligibility, which makes them "categorically" eligible for Medicaid under federal regulations. [*sigh ... But see second post below for details of a potential complication]
The process to establish SSI eligibility is Byzantine, and it often requires multiple medical visits with specialists to enter reports and assessments. These are not covered by any governmental program in advance, and so people often wait to save up money to apply. In theory, all Medicaid cases must be given an initial ruling within 90 days of application. In practice, the success rate of applying without prior establishment of SSI eligibility is pretty grim in many states. [See post below this for details of why it is particularly difficult in Oregon.]
Her timing is also not good. July of 2007 was the peak of backlog for the SSDI and SSI case claims (749,224 nationally). According to the NOSSCR Social Security Forum, the average wait from initial application to final decision (including appeals) through the Seattle office was 602 days.
---
Dead_Horse, these are the minimally varnished facts. If you would like a longer rant-filled diatribe about how much money this additional processing and weighing of cases for eligibility adds to the US healthcare system bill, as well as some choice words for the burden this places on many, many individual lives and individual health outcomes, I would be happy to further provide.
posted
Additionally, Oregon historically runs out of Medicaid funds before the end of the fiscal year, so they were the first state to establish a prioritization list for specific diagnoses that will be covered under Medicaid. The Oregon legislature funds that coverage only up to a certain point on the list.
In the past, there has been a lot of controversy about the ranking on that allocation list, leading to famous cases of children's families begging for private donations (for things like liver transplants) via gas station change donation cups.
Lest anyone think this is a given outcome for providing widespread coverage to a population, I refer you again to the above post, which briefly indicates how many resources are spent in sorting through and attempting to deny cases that then go through appeals (requiring lawyer representation for the state in front of a special appeals judge). I'll also refer you yet again to the morbidity and mortality rates for all of the other modern industrialized countries with national healthcare coverage, as compared to those of the US.
---
Edited to add: Needing surgical treatment (and only the surgery, which is drilling burr holes through the skull) for an acute intercerebral bleed is listed as #31, but she was disqualified for surgery at the time she was bleeding because she wasn't stable enough for surgery. Thus she had to pay for medical (non-surgical) treatment out of pocket for a diagnosis that would have been covered had she been not so bad off that she couldn't have surgery.
If she had a brain tumor instead of Arnold-Chiari malformation, she would have been covered because of surgical or medical need under line #136. However, this is not a tumor; it is essentially an accidental remnant tie of the brainstem to the spinal column that makes the brain get dragged down out of the skull as the person's spine grows longer. Unfortunately, this is considered a malformation of the brainstem but not the spine itself (although they form a continuous structure) -- because for the latter, she would have been covered under line #140. Arnold-Chiari malformation with symptoms requiring treatment is relatively rare, and it is not specifically listed on Oregon's diagnosis prioritization list.
You can see why she is focused on establishing federal eligibility for SSI/SSDI benefits, as this would categorically force [although maybe not -- see post below] the point of getting her on Oregon Medicaid rolls*** even if her specific diagnosis is not covered on the Oregon allocation list.
---
***Medicaid is (like SCHIP was) a federally mandated program that is set up and administered by individual states under federal regulation with respect to certain federal guidlines. This is what the Oregon system looks like -- the Medicaid application process through different states would look very different from this.
She could move to another state and establish residency there, but that takes a good bit of time, requires more resources, would mean having to find a whole new set of physicians and surgeons (with their own office backlog waitlists even to be seen initially), and -- as many college students can attest -- is often much more complicated than it looks, as well.
Plus even if the other state would cover her case under Medicaid, her only guarantee (as always) is to establish SSI/SSDI eligibility first, which she is already in the process of doing. Unfortunately, that decision is not made by physicians but by bureacrats, so just as someone may be turned down by a private insurance company for treatment deemed essential by any number of physicians in the case, so too can an SSI/SSDI case be turned down despite the medical documentation of need.
posted
Whoops, I forgot a key point: I seem to recall that Oregon may have exempted itself from some federal regulations (maybe even the mandated Medicaid coverage of SSI/SSDI eligible applicants) as part of the US Centers for Medicare & Medicaid Services drive for "innovative demonstration projects." That is, in order to do a state-wide trial of the allocation list system, the US federal government may have approved a lifting of the requirement to categorically cover SSI/SSDI eligibles.
The details would be found somewhere at that link. I have never practiced in Oregon, so I don't know if this is (or was) an exemption that held there, but I think I ran across that in my readings on federal access.
I hope this young woman has retained her own professional counsel for navigating the system, or she may be getting screwed anyway.
---
Edited to add: You can see that there is not a simple answer to your simple question, Dead_Horse. *rueful
Imagine trying to figure this out for yourself with brain problems and without any experience in the field.
posted
Yes. And if you lose it, often you have to start all over again.
In some states you can lose Medicaid if you do not file a continuence form in time -- a form that you may not have been told needed to be filled out for that state's Medicaid program.
Byzantine, befuddling and broken.
Posts: 14017 | Registered: May 2000
| IP: Logged |
So, someone suggested I contacted Neil Gaiman and ask him nicely to include a link to the website Project Erin (oh my gosh, I love you harmy) and he did. Today.
I laid down around 3 this afternoon due to pounding head pain and woke up around 7 and opened my Outlook Express and there were over 100 emails, half of them notifications of new Project Download members for the Yahoo Groups. Needless to say, Neil Gaiman posted the link.
We went from 28,616 downloads last night to 30,566 tonight. Almost 2,000 downloads. I really don't know what to say, because I keep crying on and off as I type this.
There were comments with questions that got lost in the shuffle, so I'm going to try and remember them and answer them here.
First, my PayPal is broken. It should be fixed in a day or two.
Second, the hotlinked files and do they count as Reward Points? Yes, because of the type of account I have. Everything's been double and triple checked with MU, and those emails were saved in a special folder in case a lawsuit becomes necessary down the road.
Third, why are the qualified countries so limited? I'm not sure. I think it's lame, too.
I wish I had more to say, but I don't have the words I'd like to truly get across what I'm feeling right now. I'm a little medicated and a lot overwhelmed.
I love you all, so much.
Erin
And now I am crying, and I have to put this aside and go study.
Posts: 14017 | Registered: May 2000
| IP: Logged |
quote:Originally posted by ClaudiaTherese: Imagine trying to figure this out for yourself with brain problems and without any experience in the field.
I get a headache just reading it, even though I dutifully read through my auto insurance policy and whatnot when I get them Posts: 7593 | Registered: Sep 2006
| IP: Logged |
posted
Hmmm, I see....Oregon Medicaid rules are awful. Ohio is not so bad. Still a mess of hoops to jump through, but not so bad.
Posts: 1379 | Registered: Feb 2002
| IP: Logged |
posted
I do have experienced going from "able bodied" and working a good job to mentally and physically disabled and on Medicaid, to being on SSDI and Medicare. It is a nightmare and the backlogs, appeals, paperwork and rules are befuddling.
Thank goodness for friends and relatives who support those in the process. Now I try to advocate for people who have similar problems. I volunteer weekly or more at our domestic violence/sexual assault crisis center and women's shelter, lead humanitarian aid services at church for my county, and am currently housing a couple of MR/DD people who have recently escaped from a bad living situation in another county. I can sure click on a file download button daily.
Posts: 1379 | Registered: Feb 2002
| IP: Logged |
Printer-friendly view of this topic
![[Wink]](wink.gif)
![[Smile]](smile.gif)
![[Frown]](frown.gif)
