Katie
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I think I look like a scammer. Unless I get a TV station or some other type of large well known public institution to help I'm going to look more like a scammer. The only way to offset this is to be really transparent at places like this message board so that people have enough to see and go, "No way he could make that up." I know there are people here who have been in similar shoes who can read what I've typed and would discredit it instantly if they thought it wasn't credible but it is credible and most people know it when they see how transparent I'm being.
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Another good example why we need a national health care system.
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Why does it feel like that one sentence is hugely inadequate for expressing the need and the solution?
I don't know enough about health care but I do know a lot about social assistance programs. I think if this nation wanted to do something great that wouldn't be nearly as daunting as nationalizing health care they'd fix the welfare programs.
My wife and I walked between the lines on every program we knew/know of and it's such a hassle. We get phone calls, quarterly audits and everything for a small $22 check we get every month. I know (yes personally) so many families that are taking advantage of the system and they don't have to do anything.
I think that social assistance needs to be hugely revamped and if you get welfare and food stamps a worker comes to your home every 3 months to assess your needs. In that time you demonstrate that you have been very proactive in trying to pull yourself up by your bootstraps and if you do demonstrate that but still are short (and you have a kid like Katie) you get hassle free help.
A social worker helps you to review needs both financial and medical. You work out a care plan for the next 3 months and she/he helps you by coordinating doctor visits, insurance assessments and other things. Reduce the number of people drawing social assistance by 90% because so much of it is fraud and improve the quality of it by 90%.
My wife and I don't know enough. We simply don't. We tried to get a nurse to help us with Katie a while back and the one we got was horrible. She couldn't have taken care of a stick of butter. But the nurse who came to give Katie a Synagis shot (a booster for RSV that's a $3000 per injection) was so dang knowledgeable it was insane. She sat and visited with us at length and did it off the clock. We only saw her 4 times ever but she went through our finances with us. She told us "how" to legally get around certain hitches in the system and to try and get help. She went through our infamil formula needs and said she'd fill out a slip for us to get a case of it for free. That case was worth over $1000 to us (it lasted about 6 days but it was hugely wonderful). This lady had so much knowledge and wisdom. She was a grandmother (of course) and had been a nurse for 30+ years.
I think the biggest problem is that the information and how to find it just isn't out there visibly. There's a guy here who's emailing me privately about the Katie Beckett program. He must be half attorney because he knows so much about it.
I don't know if we need to radify health care here. It seems like every time our nation does something huge like that they screw things up worse. I think what needs to happen is that the abuse of current systems needs to be aggressively pursued and stopped completely. I think that they should use as much money as they have but instead of spreading it to 90% abuse and 10% real need they need to focus it on the 10%.
If they fixed all the abuse and focused on a "One Stop" location that had all the information and each family was assigned a fully informed case worker it would help so much. I think there would be less of a burden on the system and costs would come way down.
That's my two cents but then we've been right in the middle of it so maybe should say that my four cents...
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Gosh there's a lot of information in this thread. I need to publish it somewhere...
This is the most mature adult response I've gotten so far and it's really given me a chance to be transparent and to talk about all aspects of what we have been through. I know I cannot really prove a thing but hopefully the text here and the detail will help put people more at ease. I wish I could invite all of you to my house for a day just so you could see, touch and hear what goes on...What a mess! What a total mess!
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If we had universal health care there would be a lot less headaches for you in general. It doesn't fix every problem but we have to get a clue and vote for it. It is our government and our money and we need to learn to to what other countries are doing for themselves.
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Hi Rex,
Your story really touched my heart, I bought a ticket and only wish that I could have bought more. I know how hard it is when my kids are ill, and thats nothing compared to what you're going through.
I hope that she comes out of this well, and will try to donate as often as I can, in the meantime my thoughts and prayers are with you,
Mike
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Have to agree with Robert here about universal healthcare. Given Katie's condition I doubt it would completely solve every problem you have, Rex, but it would certainly help. I think organizing raffles and such that this site is doing are great, but these are efforts that are brought about usually only in extraordinary circumstances. There are probably many other families who are going through similar things but don't have connections to well-read sites to get their stories heard. I'll donate to your cause but I'd really like to see the healthcare system in America be setup to more intrinsically help those in need, and not require people to make a lot of noise to get attention.
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Oh I agree there needs to be changes. I'd love to bring about some of those changes. To be honest I think I'm just starting to get momentum on something that over time might be able to produce some change. I doubt I'll fix everything, I'll be lucky to fix one thing. But in this life I'm learning that the only thing that truly can stop a person is the gray matter between their ears.
I was actually laughing with someone the other day about this very thing. I told them Katie's first week in the hospital produced an $89,000 bill and they said, "Who the heck pays for that? How can hospitals even expect to get paid for that? Where's the money even coming from?" I had to agree the absurdity of the costs was stifling. How do hospitals really manage?
Anyway, none of that needs answers here but maybe some change is due somewhere...
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Hi Rex,
Where are you located now? I saw a reference to Idaho in Katie's story, is that your present location?
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Most people might know about Boise, Idaho which is pretty much where I live. I now live in Meridian because the city of Meridian annexed my home out of Boise.
But yes, I am in Idaho. My wife, all 3 of my kids and I were all born in St. Luke's RMC in downtown Boise.
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It would be nice if some healthcare businesses would just pony up and volunteer some time and space, I mean really, if they took care of all of your needs for free, I doubt there would even be much of an effect on their bottom line. I know plenty of Doctors and surgeons, and they all bring in between $500K and $1M. You would think there would be some room there for them to do some probono work, but I guess I am just wishing...
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Someone gave me the idea of calling the places we owe money and asking them to forgive the debt or part of it. I'll be doing this in the next few days as you are right... I doubt I would have much affect on their bottom line at all.
I'm also going to try and contact some kid oriented organizations that help with kids, medical stuff and all that and see if they have ideas. I've learned in life it's not so much what you know as it is who you know or who they know.
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OK, the reason I ask is I was just wondering if you've considered moving to another location, possibly with more opportunity? There are a lot of places hiring out here (NYC area), and many of them have excellent insurance benefits. Plus there are a lot of excellent hospitals, etc., in the area. I know you have a lot on your plate right now, but if you're interested I can put you in contact with some recruiters I deal with out here. Just send me a Private Message if that would interest you.
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Our entire family lives here and they are the biggest form of support we have. Without them we'd be a shambles so moving isn't really an option. Both sets of grandparents have made monumental efforts to help us. A weak example but it is one...
Today is my 33rd birthday and my wife and I usually go out on a date about 2 times a year. We didn't do a single thing on our anniversary in June (had a lot of really stressful things going on) which is putting as happily at the 12 year mark (married since we were 20). So tonight we really want to go out somewhere and my parents are going to watch the kids. My mom is not intimidated at all by watching Katie and they are willing to 'vent' her and everything. My parents have totally embraced Katie and her condition (so have Deanna's) and so we actually have trusted child care. Of course they also have an entire manual (my wife typed up about a 14 page long guide) for caring for Katie and "What to do if..." which has doctors phone numbers, etc...
So tonight we are going out for the 2nd time this year (last time was in March) and just she and I will go eat somewhere. Usually we only have enough time to eat and relax and then we go pick up the kids and head home. I cannot imagine being able to do that in NYC.
Another problem is that if we sold our house right now we'd take somewhere around a $40,000 to a $60,000 loss before paying agent commission. The market tanked here and there's a huge saturation of homes. They've placed a moritorium on builders and no new homes can be built. However, houses still appraise really high. We are hoping/trying to get an appraisal on our home high enough to fold a lot of our debt into it. We know that's stupid but it sure would take so much stress off of us. Buying groceries on an American Express is really getting hard.
...uhhhh where was I...
Yeah, so the other problem is that Katie was born when I was a Junior in Computer Science at Boise State University. I had to drop out. So I don't have a degree and in the U.S. Job Market that puts me at the bottom of the barrel. The last job offer I got for a bona fide position was $15.00 an hour. Even though I worked at Micron for $64,000 a year. The job market here for tech labor is horrible. Especially since Micron just laid off the rest of their IT department and outsourced all of it.
Plus... if we didn't have the medical/related debt from being laid off, losing a home and being medically uninsured the income I make is pretty good. We could have a very comfortable life (not wealthy but I could just work 40 hours a week and we'd be fine).
So ... I just spilled my financial guts and now I feel kind of sick to my stomach. Ugh!!! This has been a very hard thing to go public about but people really do have a right to know if they are going to give. I have to be transparent to not look like a scammer. If I was my stories all over the internet wouldn't match up *BUT* they DO!!!
Happy Birthday To Me; I'm Turning 33.
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