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Lost insurance due to ACA and facing a nursing home

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  • #31
    Trainman, I think, you are doing great for being in such a stressful situation. Others would have probably given up by now. It's good to be careful with priorities, realizing one is getting burnt out. Would the media really help? Here in Germany bad things happen even if they were reported about. How likely is it that your situation may continue for three more months? (That would be good, do I understand this right, because it gives you more time to find a longterm solution?) Maybe you could shorten your 35 pages of careplan to maybe 10. If it wouldn't get you burnt out more, I would love to put in some ideas, and appreciate so much if you e-mailed me that short version. If someone else would like to help, we could do a skype conference for informal, relaxed (no way you should be stressed even more) brainstorming. But I would totally understand if you don't want more input. Shorten your careplan might, however, help with your closer contacts as well, it would, I'd hope, simplify communication and accelerate the help you are so hoping for. - I wish you luck; and keep us posted! This is important for all of us. Governments woud love to send us all into nursing homes. Only slowly are they supporting other lifeforms.

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    • #32
      I keep reading this thread hoping that some how, some way, someone will be able to find a solution for you. It isn’t fair that you have to leave your home where you have lived all these years. I don’t have any suggestions, but I wanted to let you know that there are and have been a lot of us on these boards who have been silently rooting for you.

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      • #33
        Trainman, I do not want to violate your privacy or confidentiality. I am willing to call Sen. Tom Harkin or any other representative to tell them that this is unfair. This is wrong. You should not LOSE your FREEDOM! You should be allowed to live at home and not be forced into a nursing facility. Politicians count votes. This will take a collective effort from this community. I am at your service.
        The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
        --General George Patton

        Complex problems need to be solved collectively.
        ––Paul Nussbaum
        usc87.blogspot.com

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        • #34
          Thanks for the encouragement. I spoke with Cheesecake yesterday and have a few more things to try that are in progress. One is further work with Senator Harkin's office. I still have a week to go, so we'll see what comes yet.
          C2/3 quad since February 20, 1985.

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          • #35
            This really, really sucks. I may loose my coverage soon also because my attendant care provider can not seem to recruit new workers. I own my own house and if I can't sell it and then move to an area with more workers, it becomes an asset and I loose my medicaid home care waiver.
            Sometimes we can't get a break.
            C 5/6 Comp.
            No Tri's or hand function.

            Far better it is to try mighty things, to win glorious triumphs, even though checkered by failure. Than to take rank with those poor spirits who neither enjoy much or suffer much, because they live in the grey twilight that knows neither victory or defeat.

            Teddy Roosevelt

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            • #36
              Sorry to hear forest. Living in rural Iowa, I know all too well the problems with finding caregivers. Unfortunately, I think it's going to only get worse.

              For my update, I did get another 60 days approved through Medicaid. I could copy and paste, but I have the full details in my blog entry for today, http://trainmanj.blogspot.com/2014/05/cracked-door.html. It's a temporary answer, but at least it's more time.
              C2/3 quad since February 20, 1985.

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              • #37


                It's a start!

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                • #38
                  Good to hear you have more time !
                  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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                  • #39
                    I'm feeling for all of you going through these struggles to get care. I wish there were some easier answers. Lack of care options for my husband is one of the biggest reasons I remain an expat from the US. It's really sad that such an overall wealthy country can not seem to manage something better for care, without people having to go bankrupt. Unfortunately, much of the rest of the world is following the US example now too.
                    Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

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                    • #40
                      Elarson, I wanted to stay in Augsburg, Germany after my injury. The hospital could handle me until an opening came up in one of the two good rehabs the west had in 1992. We would have to move but their guest workers are a lot more likely to show up on time every day and give plenty of warning if they need time off same as university students there. But the US Army who controls that even for DOD civilians will not allow "exceptional family members" out of CONUS. Now I get to find out how it is out here in the Midwest but for my Dad coming up. Even if you can pay out of pocket I hear home aides that are good are very rare.
                      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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                      • #41
                        It has been a while since I updated, but the latest progress is now posted. Unfortunately, they said no to continuing funding for nursing care.

                        http://trainmanj.blogspot.com/2014/0...answer-is.html
                        C2/3 quad since February 20, 1985.

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                        • #42
                          Oh, no! So sorry, Trainman. Have you talked to Cheesecake or anyone else at the CDRPF since you got this decision?? Are you able to appeal? Have you contacted newspapers or TV news to cover this?

                          (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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                          • #43
                            So much stuff to deal with, it seems cruel.
                            I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

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                            • #44
                              Yes KLD, Cheesecake and I have been working together quite a bit. So far, media hasn't been interested in my story, but I'll be trying again.
                              C2/3 quad since February 20, 1985.

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                              • #45
                                Being forced to move out of your home and into a nursing facility seems to me to be a violation of your civil rights! Will you be able to go outside by yourself to watch the trains? Will you be able to go out anywhere on your own? Will you have Internet access in this nursing home?
                                Originally posted by trainman View Post
                                Sorry for the late response, I took all day Saturday to watch trains while I'm still free.
                                The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
                                --General George Patton

                                Complex problems need to be solved collectively.
                                ––Paul Nussbaum
                                usc87.blogspot.com

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