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nanette70

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Jan 20, 2010
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14
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Loved one DX
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US
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sd
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garretson
my sister has ALS. probably has had it for 4 yrs. can anyone give me any advice on how to NOT let this financially ruin them? getting ltc insurance, getting home health, getting medicare to actually pay a bill? getting more life insurance? keeping her husband from losing everything? i know that's a huge question. but they are just now letting me get involved....and i really want to help, so any tips would be greatly appreciated.
thanks in advance!
 
Hi Nanette70, First of all Welcome to the Forum! As far as all of your questions, I will answer what I can and I KNOW there will be a ton of advice to follow me. First of all, so sorry, but you cannot get any additional life insurance than what already exists (if any) because they will not cover someone with ALS. (but be sure to keep up the payments on any policies made prior to the diagnosis). Is your sister already on social security? Is she on disability? Does she have any insurance right now? If she does have medicare already, I would contact your local ALSA and they will help you with just about all the other questions. As far as the ins and outs of not losing everything...I am sure someone here has traveled that path and will respond.....hang in there!
Hugs,
Blubear
 
If US is anything like France, the aid WILL be out there somewhere, but it's like only the super sleuths will ever find it. Paperwork skyhigh, from all different quarters, different people from different places to check up that you are not pretending, doctors who are too busy to fill in forms (have been waiting a week for mine to fill in a 2 page form for me to be officially handicapped and get the parlking permit and other benefits). Your only hope is to stumble across a caring official who will point you in the right many directions.
OR COME HERE and hopefully find all the help you need.
Good luck to you and your sister an her family
and love to all
 
thanks for the quick responses.
she has medicare, but i think they have only paid one bill since oct. she is on disability and still works teaching her internet classes. and they have private insurance that will help pick up what medicare won't, the problem is getting the medicare ball rolling. she was lucky enough to get a loaner motorized wheelchair about 1 1/2 months ago. but they still have no idea when she'll get "her" chair.
they were able to get a loan for their minivan, but not for the motorized ramps etc that had to go in it.
is the payment process always this slow? my brother spends about 6-9 hours a week working on all the billing "stuff".
what's a "local ASLA"?
thanks,
nanette
 
alsa...is the Als association...go to there website alsa .org to find out tons of info and the closest chapter to you. they will help navigate through some of this stuff. where did the loaner chair come from?....the alsa has a loan closet for equipment.
 
ithanks. i went to als.org. the nearest chapter is 4-5 hours away.
she got the loaner chair from the company she's getting her permanent chair from.
 
Medicare unfortunately from my experience does take months to pay a claim. I have medicare through United Healthcare and claims I had from back in March - April and May didnt get paid until November. Thats great news that they have secondary insurance! Every medical bill should be covered then. (eventually) A lot of doctors will let you present both insurances. "This is my primary insurance, and this is my secondary." Then, you wont have to deal with anything as far as whats been covered and when. The doctors should be the ones to submit the claims. I dont understand why your brother in law is spending so much time on all of it. Sorry the ALSA is so far, but they are worth it. Still give them a call!
Hugs,
Blubear
 
Welcome to the forum! South Dakota is awful for us :[ What can I help you with specifically? Off to see where your town is located!
 
Looks like you are close to SF [relatively speaking!] Have you contacted the MDA? SD does NOT have a ALSA :[ Where are is your SIL getting seen? The SF MDA has a loaner closet for Medical Equipment. Do you need phone numbers? There is a support group that meets in SF. Let me know what you need. Hugs, Kay Marie
 
she's in sioux falls i'm in garretson. i got ahold of Tiffany Worthley at MDA in sioux falls and she's been very helpful. i hope to get over there for a tour on thursday. the weather has really held me up...i've had one full day home in the last week, and that was yesterdays blizzard so i couldn't get anywhere. and now i'm back at work till tomorrow afternoon. but i have all day off on thursday so hopefully tiffany will help bring me up to speed then. she sent me a great book "MDA ALS Caregiver's guide" and i've been pouring over that.
i don't think we "need" anything right now, other than to get me educated on ALS and find out where the resources are...which seems to be the path i'm on....i think?
she goes to neurology associates...not sure which doc.
thanks for the info kay marie!
nanette
 
I have been on Medicare sense 2001 and never had a problem getting anything. Medicare pays 80 percent on all durable equipment for example walkers, canes, wheel chairs, commodes, bi-paps , hospital beds and so on . Some companies don't even bill for the balance Medicare does not pay. You can also get Medicaid . Medicare on Share Cost this plan does not go by income . they will pay th difference that Medicare does not.
When you need an item it must be medically necessary and have a script from a doctor . For a wheel chair you will want a company that makes them for people with ALS. Do you go to local ALS support meetings ? they can tell you who to use. If not email your local ALS association / and even ask for ALS care coordinator to come to your home. Also you can have your Dr. write scripts for you to go to Ot and PT. they will also recommend the proper type wheel chair even who to buy it from.
You are NOT to have to pay any money up front . When my wheel chair was ordered th first one ( Medicare had bought me two) th company sent a therapist to my home to evaluate me. Plus thy got records from my Doctors. Thy also go Dr.'s order. Then as soon as your wheel chair is done it should be given to you. By law they are NOT to bill Medicare until you have been given the chair. the company will bill Medicare, Medicare will pay their amount, and then if you have Medicaid too , Medicare will send the balance bill to Medicaid . they may even do this with your secondary insurance I am not sure as I have only had Medicare and Medicaid with share cost plan. After all this if a balance then the company may bill you.
You want to use companies that use Medicare only. These companies can only except the amount of money Medicare allows. For example a company bills Medicare, it will say on you statement Medicare approved amount, then Medicare will only pay 80 percent of that amount, then if you do not have any other insurance the company can bill you only 20 percent of the amount Medicare approved of. NO EXTRA. Medicare will send you statements, read them /check them make sure their OK. File and keep them. You can also open an account for your Medicare on line and See all this on line .
My second wheel chair I needed ASP. ( while waiting for first one I had a loner wheel chair) . I am 99 percent bed bound. So my hubby went to this company and picked out a pretty blue wheel chair small fit for me it was just right ! The wheel chair company called my Dr. got script faxed over ( mean time they gave me a loner ! ) then there was medical Necessary papers that needed filled out. My Dr. comes out to home reads the questions fill out with me so it took about 5 days. As soon as they had it they brought me my new wheel chair ! they did th billing then. Medicare paid 80 percent and Medicaid paid 20 percent . As easy and fast as could be !
You do not nd to b doing any billing yourself or paying any money up front. Sense I've been on Medicare 2001 I have never had to pay anything except $68.00 to my Dr's office and my co-pays for meds. My co-pays are like $2.50 for generic and ;less than $6.00 for other meds like Rilutek ..
If you do not have Medicare Part D for medications you will want to get this .
I hope I explained this OK. You do not have to do any billing yourself. You do not have to pay any money up front to anyone. the companies you buy from will take care of all that. Those companies also are not to bill Medicare and other secondary insurances until the wheel chair and other times have been delivered to you. If you are dealing with a doctors office, or company for durable equipment that does not except Medicare and do th proper method of billing change companies.
 
thanks so much for all the medicare info! i'm just starting to become involved, so i'm not sure what the big hold up is yet. it might just be a coding issue. i'll repost if i need more help...since obviously you all are so wonderfully supportive!
thanks everyone! it's nice to know i've got a place to turn!
nanette
 
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