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

  1. #11
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA
    Quote Originally Posted by trainman View Post
    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.
    Sorry, it's been a long time since I have done any HR work other than my own SSDI claim. If you are writing to a network you might want to copy Harkin and your current Congressman. I think the Des Moines Register also still is known for its editorials so you might check out their main editor.
    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.

  2. #12
    Quote Originally Posted by Sue Pendleton View Post
    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?
    Medicare will not help with homecare other than a short recovery or training period. They keep cutting back.
    You will find a guide to preserving shoulder function @

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  3. #13
    You are so young and shouldn't be forced to go to a nursing home. I worked my way out of it and am so happy to have a real home. Pray for it and fight for it! Wish you luck.

  4. #14
    Thanks Regine, I pray a solution is found as well.
    C2/3 quad since February 20, 1985.

  5. #15
    Senior Member ChesBay's Avatar
    Join Date
    Nov 2001
    Coastal Virginia
    Sorry to hear about your situation Trainman. I agree with Sue that contacting your State representatives with the details of your situation is a good idea and they will often get aides to work on solutions to issues faced by constituents.

    You have probably already looked into Medicaid Waiver services. Here in Virginia we have a Medicaid Technology / Vent Waiver to help people avoid going into nursing homes / skilled care facilities.

    I took a quick glance at some of Iowa's Medicaid Waiver services and it might be worth giving someone knowledgeable in Medicaid waivers a call in your state medicaid office if you have not already.

    Wishing you the best,

    Iowa Medicaid waivers: see pages 177-178

  6. #16
    Your local ILC/CIL should also have people who are expert at managing Medicaid waivers for attendant care and helping to keep people out of nursing homes.


  7. #17
    Unfortunately, I've contacted the two closest ILC/CIL offices in the past to see about caregiver coverage options, but they never return my phone calls. I have a friend who was Miss Wheelchair Iowa a couple years ago and is in contact with various disability resources much more than I am. Her feelings about our local ILC/CIL offices is pretty bad to put it mildly.

    ChesBay, I have been working with my county DHS worker for a couple months now with this issue. She has tried a few items, but this week she applied to see if Medicaid will pay the same amount as if I were in a care facility, but for in home nursing. My supervisor did get an exception passed a week or so ago that would pay for 40 hours per week of care. Unfortunately, that was applied for before I was told all care was being dropped. We had thought we would keep our night people without problem and 40 hours per week during the day would cover it. I can't say enough good about my DHS worker, she does A LOT of work for me in trying to get anything she can. These last couple months have especially shown that.
    C2/3 quad since February 20, 1985.

  8. #18
    I keep thinking about your problem because I remember how much I disliked living in a nursing home. Why is it that you need to be turned every 2-3 hours at night? Skin or lung problems? I am C6 and stay all night in the same side-position and never had problems with my skin. What helps me a lot is good nutrition which I started even a long time before my accident. A former friend from New Mexico wrote a book (Shelley Summers: Creating Heaven through your Plate) and gave it to me after publishing it in the 1980s, and eversince I follow her diet. If you are creative it is really tasty, I never feel like missing anything. - But if it's because of your lungs I don't have an idea what to do. I'll keep thinking about it.

  9. #19
    Anything I've read or experienced has had a maximum of two hours in one place. Any time I'm in a hospital, I get moved every two hours, if they don't move me for something else. I guess it might be me being a long-term quad, it's just part of me. Turning also greatly helps my lungs, as well as skin, so I don't know that I would want to make any big changes. Thanks for the thoughts.
    C2/3 quad since February 20, 1985.

  10. #20
    I'm sorry to hear about your situation. Instead of a nursing home can you get into a assisted living place? I live in one (unfortunately for me the probably perfect for you) and there's always someone here to do what's necessary including some there seems skills. All of the caregivers here and do bowel care and hand out meds and even do some IV antibiotics although they're not allowed to place the IV in the skin. That sucks that you require a vent or anything like that just to breathe. You can probably get a doctor's order to turn every three hours. I have one to turn every 3 1/2 hours during the day and delete me flat overnight. We've done pressure mapping on laying me flat and there is zero pressure on my ischiums with only some pressure on my sacrum but putting a couple pillows or something under my knees really helps with that. It hasn't caused any problems for me but I've had some of my sacrum bone removed from a pressure sore. Good luck I'm getting it all figured out
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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