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Lost insurance due to ACA and facing a nursing home

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    #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.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      #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.

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        #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.

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          #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.

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            #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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              #21
              Trying to think of a shot gun approach to things Trainman , this idea is out there a bit but perhaps trying to get the Iowa Disability Legal Rights Agency involved might be worth a phone call or letter.

              I am wondering if Title II of the Americans With Disabilities Act (ADA) and the Supreme Court, "Olmstead Decision" which calls for community integration / least restrictive environment for people with disabilities could be brought in to play. probably a long shot but perhaps worth looking in to.

              Little I know of your situation it sounds like the Medicaid Waiver probably runs into, "cost neutrality issues" , in Medicaid State and Federal funding formula which is used to decide whether it cost more to provide services in the community ( Waiver, etc.) or in a nursing facility.


              Unfortunately, like CILs and other agencies quality of services can vary from State to State but perhaps this approach mixed with others is worth a try.

              From what you've posted it sounds like you have done a great job of advocating for yourself.


              http://disabilityrightsiowa.org/what...of-focus-fy14/

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                #22
                Trainman, could you work things out yet? I'd be interested to hear.

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                  #23
                  I haven't had anything yet, and May 7 is getting closer.
                  C2/3 quad since February 20, 1985.

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                    #24
                    Would it be too much to hope that Iowa doesn't have a nursing home that can handle a vent/pace maker quad with skin issues? They can't place you in a vegetative state ward. I had problems getting my Mom into an inpatient hospice because of a dual diagnosis. If you have a great doc ask him to put every possible problem you need managed into your diagnosis. If you can't be handled by an in state facility you cannot be forced out of state as far as I know.
                    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.

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                      #25
                      Is there anything we can do to help? Spam your states people or a news network?
                      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                        #26
                        I'm not so familiar with US-laws and regulations. What support would you actually get for staying at home? How much money or how many hours? What support can you organize from family/volunteers? And what would be missing?
                        Are there other options than a nursing home? Some kind of integrated community setting, assisted living, ...? Once in a nursing home it is sooo hard to get out. I remember being in a nursing home in Santa Fe, having a roommate of 80+ with bad hearing, and her speaking clock announced EVERY hour, and I had no chance to stop that. Now, having a home in Freiburg, Germany, I enjoy it so much. But in my part of town there is an appartment complex for handicapped people, and that seems to be great too. You could also live with a few other handicapped people and share the costs for assistants. Here in Germany it is very common to hire live-in assistants from Poland. That is a lot more reasonable than a mobile caregiving agency if you need longer hours of assistance, and there are legal ways to do that through agencies. You just need to be very precise with your expectations + comparing that with their experiences. That worked very well for my mom (I benefitted too from that since we lived together, now, since mom died, I have a student who helps me cooking and cleaning in exchange for free rent).
                        What I'm trying to say is: there are many ways to manage to find other solutions than a nursing home; just check ALL the resources you can think of (you are very good at that anyways, I got the impression).

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                          #27
                          Hang in there and hope Joel.

                          As Jenn said if there is anything I can do from long range just shout!

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                            #28
                            Sorry for late replies, we finally had nice weather yesterday and I wanted to get out while I was still "free." What we're waiting to pass would cover the hours of care I get now. One caregiver will get a pay cut and they will have a lot more paperwork, but that's the only change I'm aware of. However, we've been told that will only go for three months, or until I find something else, whichever happens first. What that something else is supposed to be, I don't know.

                            The nursing home told me about the middle of last week they were trying to see if they could fit my schedule in with their other patients. I was supposed to have been told if they could take me a few days ago, but they haven't decided yet. My caregivers laugh when they hear I might be too much work for the place, but I don't know who else they have. I find it annoying that I gave them my training/care book, all 35 pages, explaining in detail all my cares at the beginning of April and they are just now deciding. If they say no, I'll have to look at places that are several hours away from home.

                            If it doesn't pass that I can get care at home, I guess I would spam news stations. I've contacted a few, but haven't received any interest. I don't know that it would help any, but it at least would let people know what's going on. Thanks for the encouragement and ideas, I'm getting burned out with trying every resource and rarely getting help, but I do keep trying.
                            C2/3 quad since February 20, 1985.

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                              #29
                              Trainman, please check your PMs.

                              (KLD)
                              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                              Comment


                                #30
                                Already read, thanks KLD.
                                C2/3 quad since February 20, 1985.

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