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Discussion Starter · #1 ·
I am feeling really down today, The children's hosp called the other day and they want dd back there on the 28th after we just spent 4 days and about $400 down there (gas, hotel, and some cheap fun stuff she she'd have positive memories of the hospital and not just getting poked and bad things happening). As a result nothing got paid the last month except food, car gas for work and the car payment. Now I've got double bills to pay, the rent was due on the 5th and the manager agreed to let it slide till the 16th since we needed the money to go to the hospital. Well its the 19th and he called looking for the rent and I cant figure out where the heck the money was spent for it plus the regular car payment is due. So to get it all straightened out I gotta find about $600 in the next 2 weeks and I'm clue less about how I'm gonna get that kinda money! Oh yeah, add another $100 in gas just to go back to the hospital next week and that's only if she's impatient because no way can I afford a hotel for another week! (220 miles each way, no way am I driving that in 1 day) How do you afford the stuff your kids need? We cant even afford the gas to get to the Dr's and money is going to get even tighter if I go back to school next month like I'd planned. (which could get me fired for taking so much time off work but I don't want to tell my boss till I know I can get the loan for school). We were doing so good financially till she had to go down there. I mean yeah it was paycheck to paycheck but at least we didn't worry about the bills getting paid. A couple people offered to pay me to fix as much of there credit as I can as they've been impressed by what I've been able to do on my own the last 2 months, wonder if I can make enough to catch us up. How do you afford the cost of these kids and still keep your head above water?
 

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I want to second the suggestion regarding state assistance programs. The one warning I have here is that wait lists are long. We've been on the wait-list for a year, and we're facing at least another year (probably more since there have been budget cuts). There are also grants available, depending on what your need is. The suggestion to check with the hospital is a good one, and if you are connected with a support group of any kind, they might have some information as well.

I posted on another thread about an autism conference I went to yesterday. I got a 2004 resource guide for disabilities of many types in the US and Canada. If you want to PM me with information about your daughter's specific disability and where you are, I'd be happy to check the guide to see if it has any resources listed for you.

All the best,

Tara
 

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Discussion Starter · #4 ·
The state covers most of our medical costs but does not cover things like hotels or mileage and thats whats nailing us. We came up with a plan to put off going down there for a month or two while still proceeding with treatment. Now all I need to do is recover from the current $ situation.
 

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Quote:

Originally Posted by Satori
The state covers most of our medical costs but does not cover things like hotels or mileage and thats whats nailing us.
Is there a Ronald McDonald or some such hospitality location????
 

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Discussion Starter · #6 ·
yes and I was told it was filled up with cancer kids, I doubt the SW even called to check. Reminds me, I need to call her boss and complain, she was the worst SW we have ever had! There discussing admitting us but I cant even come up with the $100 in gas this month. I think our plan will work fine, the Dr is supposed to call back mon or tues to discuss our options. This is one of the reasons I am going back to school, so money will no longer be an issue! (meaning i'll make a lot more money when I get out)
 

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Satori,

Call the hospital and tell them you don't have enough money to travel/stay in the area. There is usually a slushy fund for travel funds--you just need to tap into the right resources. The director of the sw department is a good start.

Good Luck mama--this is such a tough row to hoe, and it certainly isn't made easier by lack of funds.

 

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You might also be eligible for your dd to receive Social Security Disability Funds (SSI) because of her condition. The average payment is $500 per month. Some families have incomes too high to receive it, but it is worth an application if your child's condition is chronic. In most states there is also a waiver for SSI if your income it too high--I think it is called "Katie Beckett funds" though that might just be what they call it in my state. You would apply through your Social Security Administration office.
 

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Besides SSI and Medi-Caid, some states have a program which WOULD cover costs of travel, lodging, and food costs aonnected to medical appointments/procedures. In California it is called California Children's Services. Talk to your hospital social worker and tell her your issues- it's her job to get you the information that you need and help you find programs that can help you.
 

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Sorry about the short earlier post. I was nak.

Our state has a special agency called Division of Specialized Services for Children that would cover travel expenses, et al. Most states have something like this. Although it is connected with your finances, I make over $30, 000 and we are eligible. I believe our finances were over $60, 000 a year when we were approved (dh was laid off). Definetly call the Supervisor or Manager of Social Services or "Hospital Hospitality" to let them know your situation.
 

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Discussion Starter · #12 ·
Thanks mama's, the hospital called last night and her biopsies came back neg which was surprising so there transferring us back to the other hospital where we have no lodging issues. We do how ever have serious issues with our GI there sending us back to and have been butting heads with him for several years and I think our case manager got so fed up with hearing me complain about him she's allowing us to switch our care to another hospital which is actually 60 miles closer (hour longer drive though because of traffic) with the excuse of continuity of care as she already sees a dr there and they agreed to cover dd's formula with just a script from the pedi rather then the GI so things are looking up
 

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Sorry to post again. When my son had his two heart surgeries a year ago we had to put $6000 on a credit card for travel expenses. We will probably be paying it off for a very long time, but I had to be there. Credit cards can be evil, but they sure come in handy sometimes.
 

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In Wisconsin we have a thing called Medical mileage reimbursement. It is $.24 a mile, but it is round trip mileage calculation. If you have medical assistance whether through the state, SSI, Katie Beckett, etc. You can count going to any dr, pharmacist or therapy session that gets billed to your medical. It is worth asking about and seeing if your SW just didn't let you know that there was such a program. I found out about it by accident. I know the finacial hardships very well. Best Wishes!
 

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Thanks for this thread, and glad things are starting to look up for you. Hope you find ways to get help with the costs.

I'm bracing myself for a switch in medical insurance from a great one to a poor one. We will be losing dd's specialists under the new plan, and will probably have to start paying for:

her special formula: $250/month
pump rental for night feedings: ??/month
meds: $200/month

I may be getting an evening or night job to help make ends meet. Hopefully she'll outgrow this before long but my intuition says she's going to need help for a long while yet.

Darshani
baby Nitara: GERD, Failure to Thrive, Sandifer's Syndrome, NG tube fed, lactose intolerant (can't even take breastmilk)
 

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Boy do I know how those costs can add up especially with gas prices being so high right now.

I would second the suggestion of contacting your local shriners. My dad's in the shrine and he drives people to hospitals sometimes. It's not just to the shrine hospital; he drives them to other hospitals as well if that's where they need to go. My other thought was to ask the doctors if any of the tests could be performed locally and the results sent on to them so you could avoid the trip sometimes. I don't know what the tests are so I'm not sure how feasible that is, but maybe it could be done. Also (I'm sorry I'm new around here so not up to date on your history), have you mentioned these concerns to the doctors themselves. I know my daughter's doctors (most of them anyway) are very conscious of the distance we travel to see them so they will see her on days they aren't usually in clinic or seeing patients so that we can see more than one doctor when we go there and save ourselves trips.

I hope you find something to help you out. It's hard enough having a child with medical problems, it only makes it that much harder when you're having to worry about money on top of it.

Ann
 

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All the suggestions above are great! I would also suggest making sure you schedule appmts at the hospital on the same day so that limits the traveling. When we were starting treatments for Joe's CP all the driving was a nightmare {mostly because he hated it LOL} but I talked to the Dr and he told me about a very small practice that he was at only once a month and it was right near my town! He pulled some strings and got us in there - removing at least one long distance trip.

HUGS and I hope things are looking up for you!
 
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