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stephie

Distinguished member
Joined
Mar 28, 2008
Messages
117
Reason
CALS
Diagnosis
01/2007
Country
US
State
mn
City
coon rapids
I am shocked and disappointed to learn that our health insurance, which we considered to be very good insurance, covers absolutely no home health care for my husband. He is 41 and was diagnosed 2 years ago. He no longer works and spends his day at home in a wheelchair while I am at work. Friends and relatives stop by to feed him lunch every day, but he will not be able to stay home alone for much longer.

Is this common for health insurance to provide no home health care? I was told that his condition is not deemed "medically neccessary." I got the same answer from Medicaire. Has anyone fought with their insurance company and gotten results on this matter? I am already so tired and sore from being his only caregiver. It is infuriating that neither private insurance nor the government sees the need for a person with ALS to receive home health care!
 
Wow, I would think between Private insurance and Medicare home nursing is avaliable. Matter of fact I was almost Completely sure it did, I was counting on it for myself in the near future. I am looking now, but I am pretty sure it is covered..
 
I was reading and you were correct it does not cover anything but skilled nursing care, maybe your doc could re-word things, why does this have to happen to ALS patients..UGGH
 
Hoping-
We tried that route, too. Our doctor can only order visits for things like wound care and therapy following an injury or surgery. It allows for a few visits, then you're done. It literally took my breath away to hear that from our insurance company!
-Stephie
 
Before Mom got into a nursing home, I had to hire a PSW (Public Support Worker) to come out every morning to help Mom dress.. and bathe 3 times a week..Now nearing the end, need to hire a nurse when it gets closer, because they do not have enough help at the nursing home to give Mom the time she'll need in a few weeks..Two different countried, biut both with the same problems when it comes to this kind of health care.
 
Medicare lied. The following is from the Medicare and Home Health Care pamphlet available on Medicare.gov/Publications/Pubs/pdf/10969.pdf

Who is eligible to get Medicare-covered home health care?
If you have Medicare, you can use your home health benefits if you meet all the following conditions:
  1. Your doctor must decide that you need medical care at home, and make a plan for this care.
  2. You must need one or more of the following:
    • Intermittent skilled nursing care
    • Physical therapy
    • Speech-language pathology services
    • Continued occupational therapy
  3. The home health agency caring for you must be approved by the Medicare Program (Medicare-certified).
  4. You must be homebound or normally unable to leave home unassisted. To be homebound means that leaving home takes considerable and taxing effort. A person may leave home for medical treatment or short, infrequent absences for non-medical reasons, such as a trip to attend religious services. You can still get home health care if you attend adult day care.

If Medicare refuses you talk to your local ALSA rep they should be able to help.
 
stephie,

Medicare does not cover "custodial care" and nearly all other insurance companies follow the same guidelines for medical necessity as Medicare. An aide is covered only if there is another skilled service (nursing, PT, OT or ST) also required for care. The aide however is intermittent and not covered to stay for blocks of time but rather to help with bath and dressing, etc. Once the skilled service discharges the person, the aid stops as well. Here is more info from Medicare about coverage.

http://www.medicare.gov/Publications/Pubs/pdf/10969.pdf

In Kentucky, Medicaid pays for this type of care through the Home and Community based waiver program. The financial eligibility for this program is a little less strict than standard Medicaid eligibility. Unfortunately many families have too much income to be eligible but I thought it was worth mentioning. Here is the website for KY if you would like to learn more to see if your state has a similar program.

http://chfs.ky.gov/dms/hcb.htm

KY has a resource called The Center for Accessible Living. It has a personal care attendant program that provides assistance for up to 40 hours per week however it is way, way, way underfunded of course and has limited spots and a waiting list. Not sure if your state has this kind of program.

The VA has a program called "THE VETERANS' AID AND ATTENDANCE SPECIAL PENSION" which covers this if you or your husband by any chance are veterans. My grandfather and grandmother used this to help pay for costs at an Assisted Living program.

I wish I had a solution to your situation but unfortunately I don't. I just thought I would share some ideas of other places to look. A social worker for your hospital or home health agency in your area may have other leads.

Sincerely,
Dana
 
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Dana is right in that Medicare does not pay for private duty care--just quick visits for a limited period of time. Disgusting, I know. If necessary, I will spend the rest of my life lobbying for Medicare to cover this service. Private insurance usually doesn't either, unless you have long-term care insurance. Even then, you usually have a waiting period of several months before benefits kick in (and don't expect to get long-term insurance unless you are in perfect health--insurance is for the healthy). Medicaid is your best bet, but you have to meet the income requirements.
 
health care

I have bulbar onset and do not need homecare at this point but probably will down the line.This will be covered here in canada.I am not a big believer in socialism ,but the are some things that should be and thats health care ,there seems to be so many serious issue with the system there that affect people that really help and care
 
I also am frustrated. I leave my husband for four hours 5 days a week(he is sleeping) and pay someone to come in the other four. It's very expensive and the only help I found was from medicaid, although he does not have medicaid, they said it was like a loan and they can get money back from estate. When I heard loan and estate I knew that was not good. His dr recently susgested Hospice, have you heard of them, they will come everyday and help with things. It does not cost anything. We also have ins and medicare. It is terrible and sad that we can't get help like we need. My husband is 52 and we are starting our 3rd year. His legs and head are the only thing he can move. Has a feeding tube, cannot swallow.
 
stgeorge-
I am so sorry that you have to leave your husband alone for 5 hours! It is scary to be at work when you know that your husband is home alone, isn't it? My husband is home alone for most of the day. A friend or relative stops to feed him lunch and help him use the bathroom, but the rest of the day he is on his own. He is in a wheelchair with very limited use of his hands and arms, but he can still operate a T.V. remote and drive his wheelchair. I just can't imagine what we will do when he gets to the point that your husband is at. Our kids get home from school about an hour before I do, so at least he has someone there before I am home.

I am interested in how the Medicare loan works. I will have to do some checking on that.
 
I went through this with my mom. Once we got to the point where it was dangerous to leave her alone while I went to work (teaching), we were amazed at how little help we could find!

We went through a looong process applying for medicaid (depressing process). I was very excited when we finally got an intake nurse to come and assess how many hours we would be allowed. For PALS, it's very generous. Except when we learned that any hour billed to medicaid would go back to the state, it seemed absurd! Especially considering a PCA hour is billed at about $13 per hour. My mom was heartbroken thinking about how she had worked her whole life to pay off her home, something she wanted to leave to my brother and I, only to find out the state would just snatch it up when she died.

Ultimately, it made more sense for me to find help on my own. One of our local churches has a large immigrant population. It just so happened that a fellow faculty member (a refugee from Cameroon) was active in the choir and knew many women who were looking for jobs. We ended up with a wonderful young woman who stayed with my mom while I was at work. We had to be careful about how much work she did, how she was paid, etc. because she was a refugee and didn't want to jeopardize her status by doing anything illegal. But it ended up giving me GREAT piece of mind. As there were a few days leading up to hiring her where my mom (the great stubborn fearless woman) would cry because she was afraid to be left alone. I am still haunted by that.

Sadly, she passed away a couple of weeks into summer vacation, once I was able to be home with her full time. But I am forever grateful to Alvene, the young woman who cared for her. And my mom was so glad to be able to leave her home behind as a nestegg for her children.

What a crap system of insurance we have here in the US.
 
Mom, has gotten even sicker then the last time I wrote, and now in a nursing home, in the last week, we had to hire a private nurse for 3 days a week, and now up to 5 days a week. The costs is ubbelieable.. $30 a hour, so $240 daily.. Have wonder about government.. and the sick..
 
Mom, has gotten even sicker then the last time I wrote, and now in a nursing home, in the last week, we had to hire a private nurse for 3 days a week, and now up to 5 days a week. The costs is ubbelieable.. $30 a hour, so $240 daily.. Have wonder about government.. and the sick..

If your mom is in a nursing home why do you have to hire a private nurse?
 
If your mom is in a nursing home why do you have to hire a private nurse?
Because they don't have enough staff.. because of cut backs, and Mom needs one on one..
 
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