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Hotwheelz
06-29-2011, 01:27 PM
Hey maners, I'm looking for some help. Lemme tell you my story.

I'm a 21 year old male with muscular dystrophy. It's a progressive disease that prevents my muscles from making any energy. This, in turn, causes the muscles to atrophy over time, I have lost the ability to walk, move my arms, eat and breathe. Because of this I require around the clock nursing care. But this has not stopped me from striving for an independent life. Last year I moved away to UCLA by myself and lived away from my family for a whole semester, unfortunately I had to come back home to San Diego at the end of December. One of the reasons I had to come back was because I was involved in a battle with the State of California over my nursing hours. The state funds my care through a program called The NF/AH waiver, under this waiver pediatric patients get more money than adult patients. There are 3 categories in the waiver, they are; A/B, sub acute and acute, acute being the level with the most funding. Medical put me in the sub acute level of care, even though I qualify for the acute level of care. We appealed their decision and went to court with them, we managed to convince the Judge that I was, indeed, qualified for the acute level of care. However, the director of the program overturned the judges decision, and provided no reasoning for his decision, starting in July my nursing hours will be cut down to 13 hours a day. This severely hinders any plans I have of being independent, I will have to rely on my parents for half the day every day. I am not the only person they are doing this to, I want to get my story out there in the hope that it can make a difference, not only for me but for everyone else.

If you guys could spread this around the internet or if anyone has media contacts, I'd appreciate your help. Here's the news piece from telemundo:
<iframe src="http://www.youtube.com/embed/mqSqkyqDETQ" allowfullscreen="" frameborder="0" height="390" width="480"></iframe>

TheElusiveKyleOrton
06-29-2011, 01:35 PM
Holy ****. How can a program director overturn a judge's decision?

Sorry to hear about this. I'll certainly send it to some folks I know and see if they can use it.

Ratboy
06-29-2011, 01:36 PM
Make your way over to reddit and post this.

Hotwheelz
06-29-2011, 03:17 PM
Make your way over to reddit and post this.
http://www.reddit.com/r/reddit.com/comments/icn9j/fighting_the_government/

scttgrd
06-29-2011, 04:34 PM
I hope you get the care you need, I posted on reddit in support.

Hotwheelz
06-29-2011, 05:05 PM
I hope you get the care you need, I posted on reddit in support.

Thanks man, everything helps.

cutthemdown
06-29-2011, 05:13 PM
Not surprising calif it totally broke. Bummer though sorry for your troubles.

scttgrd
06-29-2011, 05:14 PM
Thanks man, everything helps.

I'm not sure why you aren't getting more support here. I remember some of your posts a year or two ago, I would have guessed that some would have been more caring. I guess it really is a "got mine" culture these days.

ozomulsion
06-29-2011, 05:16 PM
You're a Bronco fan, and that's all that matters here.

The video is in Spanish, but I hope no one questions
this without watching it. If you have a heart. The
video is easy to understand.

We'll band together and get you the help you need.

Hotwheelz
06-29-2011, 05:21 PM
You're a Bronco fan, and that's all that matters here.

The video is in Spanish, but I hope no one questions
this without watching it. If you have a heart. The
video is easy to understand.

We'll band together and get you the help you need.
Thanks man, I'm currently trying to get the attention of the MSM here in the US.

scttgrd
06-29-2011, 05:29 PM
You need to post this on democratic underground, you might get a bit of response there.

elsid13
06-29-2011, 05:44 PM
You need to contact your local representative - House and Senate. This is the kinda of stuff they love to get involved with and you will need the political pressure to get the director to overturn the decision.

Ratboy
06-29-2011, 05:55 PM
Should have posted a different title. Something like "Help! I'm a 21 year old male with muscular dystrophy that is being refused full nursing care"

May get more looks.

I upvoted you already!

Hotwheelz
06-29-2011, 06:00 PM
You need to contact your local representative - House and Senate. This is the kinda of stuff they love to get involved with and you will need the political pressure to get the director to overturn the decision.
I wouldn't even know where to begin with that. I know they probably get thousands of letters a day, I don't know how to get noticed.

scttgrd
06-29-2011, 06:14 PM
I can guess you need to start here, https://writerep.house.gov/writerep/welcome.shtml

Or here, http://www.senate.gov/general/contact_information/senators_cfm.cfm

Get a number and make the call, it can't hurt.

worm
06-29-2011, 06:22 PM
Unfortunately, the 'strategy' of funding adolescent patients to a far greater extent than adult patients is not isolated to just muscular dystrophy. It is the general approach for most disorders.

This was a very recent point of emphasis with autistic programs, for example.

While the director of your program didn't provide you a reason for his actions....most assuredly it has to do with money and how he is funded and measured. 21 is the magic age for a lot of disorder benefits.

Getting your story out there is a fantastic thing... and I really hope it brings you the benefits that you think you deserve. However, IMO, I think you are fighting a huge uphill battle that extends well beyond your director, program and disorder.

If there are other people you are aware of in a similar situation as you...is it possible to find a way to team up and share care providers...thereby achieving a somewhat independent life? Thinking of other possibilities as you continue to work on getting the director to reverse his actions might be the best course of action for you.

I read your blog at the beginning of the year when you first posted this issue here. Thank you for taking the time to write it. It made me better understand where you were coming from.

Hotwheelz
06-29-2011, 07:06 PM
Unfortunately, the 'strategy' of funding adolescent patients to a far greater extent than adult patients is not isolated to just muscular dystrophy. It is the general approach for most disorders.

This was a very recent point of emphasis with autistic programs, for example.

While the director of your program didn't provide you a reason for his actions....most assuredly it has to do with money and how he is funded and measured. 21 is the magic age for a lot of disorder benefits.

Getting your story out there is a fantastic thing... and I really hope it brings you the benefits that you think you deserve. However, IMO, I think you are fighting a huge uphill battle that extends well beyond your director, program and disorder.

If there are other people you are aware of in a similar situation as you...is it possible to find a way to team up and share care providers...thereby achieving a somewhat independent life? Thinking of other possibilities as you continue to work on getting the director to reverse his actions might be the best course of action for you.

I read your blog at the beginning of the year when you first posted this issue here. Thank you for taking the time to write it. It made me better understand where you were coming from.

You are very right about it being about money, that's why it's so hard. Right now we're trying to get this private insurance that's something like $600/month and use that in combination with this program to get the care I need. It's expensive, but it's better than nothing.

And thanks for reading my writing!

myMind
06-29-2011, 07:10 PM
Best of luck brosef! ^5

elsid13
06-29-2011, 07:10 PM
I wouldn't even know where to begin with that. I know they probably get thousands of letters a day, I don't know how to get noticed.

Just email them, they have staffers that go through all that stuff and respond. Trust me it not as hard as you would think.

scttgrd
06-29-2011, 10:08 PM
Lets bump this up so it doesn't just go away.

Hotwheelz
06-29-2011, 10:12 PM
Lets bump this up so it doesn't just go away.

Thanks.

I emailed my rep. Probably won't do anything, but you're right about it being worth a shot.

Meck77
06-29-2011, 10:16 PM
Hotwheelz....Would love to help however I can. Just let me know how to help.

scttgrd
06-29-2011, 10:22 PM
Thanks.

I emailed my rep. Probably won't do anything, but you're right about it being worth a shot.

I will make the calls I can, if I knew for sure who to call. You deserve the care you need.

Hotwheelz
06-29-2011, 10:29 PM
I will make the calls I can, if I knew for sure who to call. You deserve the care you need.

Thanks!

Meck, if you have any media contacts at all or if you don't then just spread the word to as many as you can.

Hotwheelz
06-29-2011, 10:55 PM
Also as suggested http://www.reddit.com/r/reddit.com/comments/id0mt/help_im_a_21_year_old_male_with_muscular/

Los Broncos
06-29-2011, 11:23 PM
Maybe the mods can sticky this

I hope you get the care you need, god bless you.

scttgrd
06-29-2011, 11:41 PM
I Pm'd Taco, maybe we can get this the sticky it deserves.

Rother8
06-30-2011, 12:05 AM
Keep going strong man, we're all rooting for ya!!

God Bless.

Blueflame
06-30-2011, 12:12 AM
Maybe the mods can sticky this

I hope you get the care you need, god bless you.

... Done....

Best of luck to you, Hotwheelz.

on edit: And this is the Mane at its very best... the community coming together in support of a poster who needs help.

Hotwheelz
06-30-2011, 12:24 AM
... Done....

Best of luck to you, Hotwheelz.

Hot girl, in thanks for the sticky

Jay3
06-30-2011, 06:39 PM
You're a fighter! Hang in there and we're praying for you.

Falconer
06-30-2011, 08:15 PM
I wish that I had some kind of contacts or better internet abilities to help you with. Unfortunately I don't, but I will be praying for you. If there is ever anything specific that you need done, please let me know and I will do whatever I can to help out. Believe me this truly is a great place that will band together to help out.

Hotwheelz
07-04-2011, 01:59 AM
I wish that I had some kind of contacts or better internet abilities to help you with. Unfortunately I don't, but I will be praying for you. If there is ever anything specific that you need done, please let me know and I will do whatever I can to help out. Believe me this truly is a great place that will band together to help out.

Thanks man. If you want to help you can vote for this::

http://www.reddit.com/r/reddit.com/comments/id0mt/help_im_a_21_year_old_male_with_muscular/

Taco John
07-05-2011, 10:38 PM
Thanks man. If you want to help you can vote for this::

http://www.reddit.com/r/reddit.com/comments/id0mt/help_im_a_21_year_old_male_with_muscular/

Reddit is a joke. Your story paints the state in a bad light, so they'll ignore you. If your story was about how the corporations were screwing you by charging you too much for texting, you'd be on the front page. Reddit doesn't upvote anything that makes government look ineffective and counterproductive.

The best thing that you can do is look up every program director in your area for local television news outlets and tell them your story. You'll have better luck with conservative news outlets for the same reason you won't have luck with Reddit. Everything is about politics these days, so whatever political slant you can use in your favor is what is going to get you the most attention. So to that end, Fox News outlets are your best bet. You might even think to send a note to every Fox news program (ie. Oreilly, Hannity, etc.)

Also, send it to the local Student newspaper. All you're looking for right now is one "hit" that you can use to forward on to other media outlets. This is what I used to do for a living. I'd pitch as many outlets as I could with my client's news, and then once someone wrote it up, I forwarded that piece on to other outlets with a note saying that the story is picking up interest and if they would like (an interview), I'd be happy to arrange it. That's how you build a media snowball, and it works really well. If you can get the local paper or the student paper to write something up, you can forward it to a local television news crew and let them know that you'd be willing to let their cameras capture a day of your life if they're interested in the story. If a local news station picks it up, then you forward it to the national news.

Sorry to hear about the struggles. Hang in there man.

Hotwheelz
07-07-2011, 01:41 AM
Reddit is a joke. Your story paints the state in a bad light, so they'll ignore you. If your story was about how the corporations were screwing you by charging you too much for texting, you'd be on the front page. Reddit doesn't upvote anything that makes government look ineffective and counterproductive.

The best thing that you can do is look up every program director in your area for local television news outlets and tell them your story. You'll have better luck with conservative news outlets for the same reason you won't have luck with Reddit. Everything is about politics these days, so whatever political slant you can use in your favor is what is going to get you the most attention. So to that end, Fox News outlets are your best bet. You might even think to send a note to every Fox news program (ie. Oreilly, Hannity, etc.)

Also, send it to the local Student newspaper. All you're looking for right now is one "hit" that you can use to forward on to other media outlets. This is what I used to do for a living. I'd pitch as many outlets as I could with my client's news, and then once someone wrote it up, I forwarded that piece on to other outlets with a note saying that the story is picking up interest and if they would like (an interview), I'd be happy to arrange it. That's how you build a media snowball, and it works really well. If you can get the local paper or the student paper to write something up, you can forward it to a local television news crew and let them know that you'd be willing to let their cameras capture a day of your life if they're interested in the story. If a local news station picks it up, then you forward it to the national news.

Sorry to hear about the struggles. Hang in there man.

Thanks for the advice, boss. Would the piece on Telemundo count as a hit? And, if you're not too busy, would you help me craft something up?

gunns
07-07-2011, 03:12 PM
A lot of medical benefits are through the state. I'd also go to your governor. Like was said many states are having to make major cuts. I've never understood why they begin with the disabled. But I really have to question a director feeling he has the power to overrule a Judge. I would think there is something there to take back to court, such as he's not following your ruling Judge. Wish you the best of luck, I'm sure there is some way to get this accomplished.

todd2009
07-12-2011, 05:37 AM
Sorry to heard this,we'll band together.

Hotwheelz
07-23-2011, 04:01 PM
Just to update you guys. I got approved for a private insurance, but we're not sure how many hours they're gonna give me. We'll know come august. What we're hoping is that they give me enough so that I have full coverage between them and MediCAL.

epicSocialism4tw
07-23-2011, 07:31 PM
Something to consider if you find yourself uninsured again:
http://www.thechandaplanfoundation.org/

Medication assistance: http://www.rxassist.org/patients/default.cfm , http://www.patientassistance.com/


Don't let closed doors define you, chief. Keep pushing, keep working, and you'll find an open window!

broncolife
07-25-2011, 05:38 PM
Maybe we should send this story to the broncos or at least Tim Tebow. I think they would probably be willing to help out in someway.