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Old 06-29-2011, 02:27 PM   #1
Hotwheelz
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Default I Need Your Help

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:
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Old 06-29-2011, 02:35 PM   #2
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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.
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Old 06-29-2011, 02:36 PM   #3
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Make your way over to reddit and post this.
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Old 06-29-2011, 04:17 PM   #4
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Make your way over to reddit and post this.
http://www.reddit.com/r/reddit.com/c...he_government/
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Old 06-29-2011, 05:34 PM   #5
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I hope you get the care you need, I posted on reddit in support.
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Old 06-29-2011, 06:05 PM   #6
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I hope you get the care you need, I posted on reddit in support.
Thanks man, everything helps.
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Old 06-29-2011, 06:13 PM   #7
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Not surprising calif it totally broke. Bummer though sorry for your troubles.
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Old 06-29-2011, 06:14 PM   #8
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Quote:
Originally Posted by Hotwheelz View Post
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.
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Old 06-29-2011, 06:16 PM   #9
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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.
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Old 06-29-2011, 06:21 PM   #10
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Originally Posted by ozomulsion View Post
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.
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Old 06-29-2011, 06:29 PM   #11
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You need to post this on democratic underground, you might get a bit of response there.
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Old 06-29-2011, 06:44 PM   #12
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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.
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Old 06-29-2011, 06:55 PM   #13
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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!
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Old 06-29-2011, 07:00 PM   #14
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Originally Posted by elsid13 View Post
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.
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Old 06-29-2011, 07:14 PM   #15
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I can guess you need to start here, https://writerep.house.gov/writerep/welcome.shtml

Or here, http://www.senate.gov/general/contac...nators_cfm.cfm

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

Last edited by scttgrd; 06-29-2011 at 07:16 PM.. Reason: Added info
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Old 06-29-2011, 07:22 PM   #16
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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.
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Old 06-29-2011, 08:06 PM   #17
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Quote:
Originally Posted by worm View Post
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!
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Old 06-29-2011, 08:10 PM   #18
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Best of luck brosef!
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Old 06-29-2011, 08:10 PM   #19
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Quote:
Originally Posted by Hotwheelz View Post
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.
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Old 06-29-2011, 11:08 PM   #20
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Lets bump this up so it doesn't just go away.
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Old 06-29-2011, 11:12 PM   #21
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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.
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Old 06-29-2011, 11:16 PM   #22
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Hotwheelz....Would love to help however I can. Just let me know how to help.
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Old 06-29-2011, 11:22 PM   #23
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Quote:
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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.
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Old 06-29-2011, 11:29 PM   #24
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Originally Posted by scttgrd View Post
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.
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Old 06-29-2011, 11:55 PM   #25
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Also as suggested http://www.reddit.com/r/reddit.com/c...with_muscular/
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