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Thread: Lost insurance due to ACA and facing a nursing home

  1. #1

    Lost insurance due to ACA and facing a nursing home

    To shorten a long story, I lost my insurance due to the Affordable Care Act on March 31 and I started a new plan on April 1. Among other things, the plan I had covered nursing care, average about 19 hours a day. While on that plan, I switched from using a ventilator 24/7 to a diaphragmatic pacemaker in late 2010. At first after switching devices, insurance was giving me trouble about covering care, but after further documentation and months, I was told the pacemaker was being considered the same as the vent.

    Going forward to this past Monday, April 7, I was told by my insurer that my nursing care was being cancelled of of May 7 since I no longer used the vent. I asked the person that called what would happen if I went back on the vent, she said that in order to qualify I had to either be working to get off the vent or have a progressive disease that required a vent. I received letters yesterday to confirm the decision, but these now based it entirely on not using the vent, nothing else. Now, unless something changes, I will have no choice other than a nursing home covered by Title 19.

    I've contacted both Iowa senators, one of which is Tom Harkin, the author of the ADA, Iowa representatives, and a local news station. The response from Harkin's office has been of mainly skepticism, but they did agree to review the insurance guidelines. I have not heard back from any of the other contacts I've made.

    My county DHS worker did manage to get an exception made for a waiver to pay for 40 hours a week of care, but only for three months. That's a great start, but my parents and I don't know if it will be enough. My mom received severe leg and hip injuries in the accident that I received my SCI, so she has always been limited in what physical care she can help me with. As the years have progressed, her abilities have also decreased. Mom still does a lot, but anything major like turning, adjusting in bed, etc. is up to dad. We're trying to see if he slept near me at night and woke up to turn me every two hours if we could get it to work with four 10 hour days covered so he and mom can work. However, past experience has said that after a few days of this, everyone starts getting sick and I have more trouble with suctioning and pressure sores as well.

    If anyone is still reading or managing to make any sense of this, I'm looking for any further advice. We have considered maybe some volunteer help through our church and relatives, but are unsure how to start. I'm dealing with some major pressure sores already and have been having other problems that would require a lot from volunteer help. We're still looking for more possibilities and are appealing insurance's decision, but thought I would ask here for ideas as well.
    C2/3 quad since February 20, 1985.

  2. #2
    So sorry, Trainman!! This sucks.

    Would your insurance cover a turning low air loss mattress for you? Many of my clients use these who cannot turn themselves and where being turned at night is an excessive burden for family (or who have no one there at night).

    Have you filed an appeal with your insurance company? They all have to have a process for this, and you are entitled to request that a review of your case and appeal be done by a physician expert. You can specify the type of expert; so this could be a pulmonologist, neurologist, or physiatrist. I would urge you to file the appeal ASAP so that it can be processed while your reprieve is in effect.

    I assume you are not eligible for Medicare/Medicaid for some reason?


  3. #3
    Moderator jody's Avatar
    Join Date
    Jan 2004
    east o the southern warren
    wow trainman, that just sucks. there must be a way to get around this, as far as getting off the vent goes. I was also wondering about the turning mattress that KLD mentioned. I was looking for a video to see how they work, there are no good ones.

  4. #4
    I must be more tired than I realized. I thought I had put this under the life category and had a small panic when I couldn't find it. Oh well, it's found again.

    Several years ago, I tried a turning mattress when I was having a seating evaluation at Craig. Unfortunately, after two nights, I ended up with a collapsed lung due to it not being turned on properly. So my experience with them isn't good. I also need to be turned completely on my side, at least 90 degrees to the bed, for my lungs to stay clear. You would have to tell me for sure, but I'm guessing the turning mattress doesn't go that far.

    Title 19 is a program of Iowa Medicaid. It will only pay for 24/7 care if you're in a nursing home.
    C2/3 quad since February 20, 1985.

  5. #5
    Sorry trainman, this is a nightmare. Do you have a sympathetic respirologist? When I was making a case for increasing my care hours, I had mine write a long letter explaining that a pacer was no less a life support system than a vent, and as such, it in no way justified reducing my hours, in fact, I would require skilled caregivers who were trained to work with both systems. If nothing else, I knew that a refusal to pay for more hours would thus put them in the position of going against doctor opinion. Of course, being in Canada, I wasn't dealing with an insurance company and that whole Kafkaesque world. I really hope there's some sort of appeal process for you. How can they possibly dictate why/ how you should be on a vent or not?

  6. #6
    Here are some videos of a couple brands of lateral rotation mattresses:

    The Freedom or ProBed works differently. Here is a video of how it works:

    For your skin, it is best to not turn more than 30-40 degrees laterally (at your pelvis). Turning further than this puts excessive pressure on your trochanter (hip) bones. Even a Rotorest bed will turn only 60 degrees. Most people find that turning more than 40 degrees also causes a lot of shoulder pain.


  7. #7
    Senior Member
    Join Date
    Nov 2001
    Panama City, FL
    Contact Fox News and have them do a piece on the insurance issue. They will love the fact you are Tom Harkin's constituent. I hope you can get this resolved without going to a nursing home.
    "Never argue with an idiot; they'll drag you down to their level and other people may not be able to tell the difference."

  8. #8
    Sorry for the late response, I took all day Saturday to watch trains while I'm still free.

    Scaper1, my doctor with the help of Synapse, the DPS company, has appealed the insurance's decision as you said. Unfortunately, that process can take a few months.

    KLD, thanks for the suggestion and videos. I guess by turning so far, I do what works for me. When I get a new nurse that only partially turns me, so around what you suggest, then my neck and jaw are extremely sore and stiff the next morning from "hanging out" in mid-air and not resting on the pillow. I'm also more congested and have trouble clearing my lungs. Since I've been turning completely on my side for so many years, I guess my body is used to it.

    Thanks 24/7, I tried CBS but will move on to Fox.
    C2/3 quad since February 20, 1985.

  9. #9
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA
    Is there some point that you can receive Medicare through one of your parents? The ACA doesn't effect Medicare but you might still lose a few hours. Are either of your folks close to retirement?
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  10. #10
    Unfortunately, what little retirement savings my parents had is going into this insurance so we could keep it. It will be a number of years before either retires anyway. Thanks for the suggestion.
    C2/3 quad since February 20, 1985.

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