So if you remember the thread about my court hearing you'll remember that I was fighting MediCAL over them wanting to reduce my hours. Well, today I found out I lost. They're reducing my hours down to 12 hours/day. I wrote about it here if you want more details. Focus: Help me get this story out there anyway you can.
FUCK THAT. Seriously. You may want to look into transferring to a school in another state. A State with better Medicaid. Let me know what I can do kiddo, We'll kick their asses.
How this is less important that bailout packages for banks is beyond me. I read your blog post but can you give us a little insight into what happens to you during the day. Does the ventilator hose pop off from time to time? Feeding tube jam? Being that you can't assist yourself in those (and potentially worse) situations. I'd write about or film yourself when the nurse leaves. Tell your family to let the camera run and just record what happens in a 12-hour span when you don't have assistance. I think that's the best way to get across the message of just how important the care is. Edit down the video or put together clips of situations that come up, especially those extra long moments when the ventilator fugs up and you might not be able to breathe again. Compelling shit.
What the fuck is this going to prove? The government isn't saying he doesn't need round the clock care. They are saying that if he wants it he has two options- 1. Pay for half of it on your own 2. If you can't do number 1, move into a nursing home Normally I would say ship him off to the nursing home*, or see the Kevorkian thread. However in your situation I think it is different. It's pretty obvious your mind is still there. How has no news station picked this up? *I only say don't ship you there because there is no way you will ever get laid in a nursing home. Unless it is by a male orderly on a power trip that is
This is a pretty good question actually. Have you thought about telling your story to the press? I'm generally of the opinion that the national press is about as useful as tits on a boar, but local news can sometimes be useful in situations like this. Also, is there a written opinion denying your benefits you can link to? It may (will) reveal more than you want revealed about you and your personal life, not to mention condition, but there are at least some legal minds on this board who aren't entirely stupid so having strangers look at it might be of some benefit. Although I would understand completely why you wouldn't want this place to know you that well. I say this because most decisions of this nature are made at administrative proceedings and administrative judges are about a step below my cat when it comes to legal reasoning and the likelihood the judge fucked something up is pretty high. Presumably you also have some sort of appeal recourse. If that is the case, get a lawyer if you don't already have one.
I've been calling an emailing local news, but haven't gotten anything but the run around. I'll scan the decision for you guys and put it up here.
As I'm completely ignorant of how all this works, and at the risk of sounding insensitive, could you elaborate on the care you receive and why you receive it? Is it through your private health care/insurance? Does the government support you? How does your family's responsibility come in to play seeing as you're their kid and I assume they are housing you? The most I know about government aid is disability payments if you can't work. Do they also owe you personal care via nurses?
You want the news to pick it up... make a compelling little video for them to run with. I think the visual of him not being able to breathe and clearly showing that he isn't a vegetable just sitting but rather a young person trying to live is down right shocking. Calling/emailing the local news puts the effort in the hands of mostly lazy nitwits that like having pre-packaged shit to talk about. There's a story here, you just need to bring attention to it before these news outlets will give you the time of day.
Hotwheelz, definitely listen to Guy Fawkes because he has got it right on the money. That is absolutely the way to go. You should also mention your FB campaign to them.
I think a well-edited YouTube video would work too -- if it goes even slightly viral that's an incentive for news outlets or others to pick it up. One ironic challenge you have is that just through writing or on Facebook you seem pretty normal and OK. While we may know that reality is very different, a video will show the contrast well.
Alright, I'm shooting the video tomorrow. I don't know shit about video editing, so if anyone wants to volunteer...
Sadly, video editing is no longer something I have the equipment and software to do. I can suggest just basically cutting the footage into a Sarah McLachlan SPCA commercial. Don't take all the animals out though, that's what sells it. Or this; the music is kind of catchy.
Do you have a friend that's got a Mac? It's got everything you need built right in... hell, you could probably even film it with the built-in camera. iMovie will do all the cutting and credit-generation stuff you need. <a class="postlink" href="http://www.apple.com/support/imovie/" onclick="window.open(this.href);return false;">http://www.apple.com/support/imovie/</a>
As fucked up as it sounds, parodying that commercial is definitely going to increase the chances of it going viral and should drum up at least numbers watching it even if everyone doesn't care about the message. I think that is an awesome idea. Is there a non-profit deal around you that would jump at the chance to (and I'm coming off real cynical here) use you to rally around their cause thus promoting your plight? Possibly contacting a local reporter who doesn't seem to get a whole lot of column space/air time? They may be able to use your story to gain themselves exposure and in turn increase yours. Talking to organizations on your campus might work as well, they might not be able to pull anything off but they sure will try. At least at my college, people would eat up the chance to take it to "the man" when they feel they have moral supierority
I think going for the local news should be your first option, but failing that you might try going political. At the very least look into your districts reps and senators and see if it is an issue they might like to champion.