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Cay Gibson
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Joined: July 16 2005
Location: Louisiana
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Posts: 5193
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| Posted: Feb 11 2007 at 12:08pm | IP Logged
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I'm asking this on behalf of a dear friend of mine. She hsed her ds until he graduated last May. He's in college now. (He is receiving TOPS through the state which pays his college as well as some financial aid through the vocational office.)
He has Crohn's Disease and I know the treatment of the disease (despite them having insurance) has been a chronic source of financial stress on this family. She has shared with me many bitter tears over their cross. 
It's hard enough being a single-income family with healthy children. Add a chronic condition and it consumes your finances. They have availed themself to various programs and financial aids but, you know how it is, her dh's income is always a buck over qualification.  They are one of the millions who has had to decide whether to buy food that week or medicine.
I'm not asking for any detailed financies here. It's none of my business and I don't mean to intrude on any of you. But I feel so much for my friend. We try to help them out here and there but nothing can ever pull them out of the medical money pit they have found themself in through no fault of their own.
I have to add my friend has dealt with it with a prayerful countenance and much grace. I have learned so much about joyfully shouldering crosses from her. But I doubt I could handle it as well as she does. I was wondering how do you, who have children with life-term medical situation, deal with this? I have seen the stress. It's overwhelming. 
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Cay Gibson
"There are 49 states, then there is Louisiana." ~ Chef Emeril
wife to Mark '86
mom to 5
Cajun Cottage Under the Oaks
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Willa
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Joined: Jan 28 2005
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| Posted: Feb 11 2007 at 11:06pm | IP Logged
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I've seen the stress, too, Cay, and experienced it before. I don't know what the solution is.
When Aidan was in the hospital after birth, his medical bills would roll into the insurance company in such a delayed fashion that very soon we were way over our insurance ceiling without having any real way to know about it. The hospital always told us not to worry about the financial aspect, that our job was to be parents and theirs was to worry about communicating with the insurance company.
We applied to a state financial service at the hospital's recommendation -- it would pay bills that went beyond 20 percent of our annual income -- but the hospital made a mistake and did not send the information to us, so our application expired without us knowing about it -- we thought it had gone through and did not find out till later that we were supposed to have met with the agency -- in our local area! we weren't even there, we were 250 miles away and going minute by minute with our critically ill infant!
We found ourself faced with a huge bill .... long story and very ugly and painful. I will not go into the details. The state service would not let us apply retroactively even after we explained the circumstances and was very cold and bureaucratic. There was a good outcome in the end since after we presented our case to the hospital they "forgave" the bulk of the bill, since they felt partly responsible for the glitches that had caused the problem; being responsible for the whole would have destroyed us financially.
Aidan's and Paddy's illnesses have cost us quite a bit in varying ways.... not to complain or say it's not a worthwhile tradeoff for our beautiful kids; just trying to share our story in the hope of commiserating with your friend. Relative to them, we have had it easy. Various services have filled in for Aidan's care in many ways. We haven't had to choose between food and medicine. We are a one-income family too and make lots of tradeoffs -- only one car and it has 170 K miles on it, for example.
I know one dad from the hospital who was self-employed and had to give up his business and go back to life as an employee to get his medically fragile son covered by insurance.
So sad -- I am reading Dickens right now and we assume that times are better nowadays, but in some ways there are still the horrible family and childhood crunches, just in a different way. Again, not wanting to whine since for the most part we haven't had the financial crunches, not so we can't live with them; just saying that the medical-care industry definitely has some glitches to work out.
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Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
Take Up and Read
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Taffy
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Joined: April 05 2005
Location: Canada
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| Posted: Feb 12 2007 at 1:39pm | IP Logged
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Even with "free" health care here in Canada, this story happens here as well. Cancer is an expensive illness in any country, for example.
We have been fortunate in that, while our son's difficulties are great, his physical health has been quite good. One of the traps that can be hard not to fall into; however, is in spending large amounts of money on things that "might" help with no guarantee of success. We've certainly spent a lot more on things that "might" help LogoBoy and have been disappointed many times. We would certainly be better off financially if we hadn't pursued these things but, you know...
While we don't have much financial stress, we do have the stress of wondering if LogoBoy will EVER learn what he needs to in order to live independently. The thought of him being helpless and taken advantage of in a group home or worse does stop me from sleeping at night. Although, I do think that his brothers won't ever desert him. But, I do have a nephew who is seriously handicapped and who could very easily wind up in a bad situation. And I can only go to God with this stress - He is the only one who can relieve it.
Sorry, I guess this doesn't answer your question, Cay. I hope someone wlse can...
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Susan
Mom to 5 on earth and 1 in heaven
Susan's Soliloquy
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julia s.
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| Posted: Feb 15 2007 at 7:11pm | IP Logged
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Cay,
My son's problems are far from chronic in the terms of treatment. He has a sever speach problem (apraxia) and just general speach articulation problems. When he was first diagnosed they suggested 5 hours a week of therapy. Between what the county allows and what we can afford of private therapy we got up to two hours weekly. Not quite hitting the mark.
My husband has a good salary and up until recently we've never been too pinched for money. Recently, however, my husband's car has cost us lots of money and we can't afford new because we are still paying off the van we bought last year. We are far from choosing food or medicine route, but we are now choosing which other medical problems we will treat.
When my son's problem was first diagnosed it took my husband fighting the insurance company every day for months (close to a year) to get them to pay the full amount we were entitled to. And even now there is only one person in the insurance company that all our paperwork goes through and if she quits or whatever we'll have to start all over fighting.
I know your friend has probably been through this, but they should review their insurance coverage. Make sure there are no government agencies or grants that could help them. Also, since he's older look into whether him not being labled a dependent would help or hinder him in this area. And work toward that end. My sister has a chronic illness and it allows her to consider buying a house at a much lower intersted rate (just something to consider). Her employment is spotty (she's a nanny and it is a a timesentive job) and therefore she doesn't have much insurance coverage.
I have colitis and have thanked the Lord that it was never Chrohns. I truly feel for your friend and her son. The worse part about the disease is that it keeps you from eating well and your resistance to fight it goes down. And if she's unable to pay for food I imagine it hurts that much more. I'll pray for her and her son. I'll pray it goes into remission -- which sometimes it does. Or that some peace can comes out of this.
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julia
married to love of her life
with ds12 ds8 ds3 and ds1
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4Real Forums : Special Blessings
Topic: The Chronic Money Pit
