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New SCI to my sister

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  • New SCI to my sister

    My sister, Beverly, a mostly retired 64 1/2 year old nurse from Oklahoma, volunteered to go to Baton Rouge last month to help feed people displaced by hurricanes. On Sep 18, she was working in a large mobile kitchen that can produce thousands of meals a day. She got hot and dizzy and went to an opening in the trailer for some fresh air. Apparently she fainted and fell to the pavement about 6 feet below. Co-workers called and ambulance and she was taken to a hospital in Baton Rouge. A family member got there the next day. Beverly has been in ICU for 24 days now.

    I think the correct terminology is that she had incomplete C4/5 injury. When she first got to the hospital she could talk, breath, move her arms and hands, and wiggle her toes. That didn't last long and she was put on a ventilator a couple days later, and now has no movement in her legs and little movement of her upper arms. On Sep 25 she had surgery to replace C4/5 and install a rod. They extubated her three days later but then had to reintubate her a day later. Of course she was heavily sedated through all of the time with a tube in her throat. She had a tracheotomy on Oct 5th and is not doing well for any length of time off the respirator. She is not yet able to speak with the valve for speech.

    Her family just learned that her personal health insurance was for only $25,000 per occurence. We had been told that she was covered by insurance with the organization she was working for, but have now been told they will only provide $10,000 total. We are at a loss about what happens now. We are trying very hard to get her moved back to Oklahoma near family and friends, but both transport and a facility (Long term acute care?) that will accept her haven't been secured. What can we do?????? She is 6 months from being eligible for medicare, and is probably just above the level of being accepted for medicaid. I think I read that even with a disability ruling and benefits from social security, she wouldn't be eligible for medicare until after 24 months.

    In addition to our insurance and financial worries, we are just starting to comprehend what is in store for our beloved sister, and of course it is affecting all of us in different ways. I will read one thing that gives me much hope for her recovery, then read something else that quells that. I'm at such a loss and trying to get as much info as possible. If any of you have any recommendations they would be much appreciated.

    Thank you,
    Christina A.

  • #2
    i'll try again...

    I was really hoping for some responses. Maybe I didn't word things well.

    What happens to people with SCI who have no insurance, no medicare or medicaid???


    • #3
      hi christina,

      others will jump in here,

      first worry about her health

      where is she hospitalised

      there are centers who spescialise in spinal cord injuries but none in OK

      someone here will tell you the closest

      best off hand advice get her there asap

      good luck

      2010 SCINet Clinical Trial Support Squad Member

      "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

      .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."


      • #4
        You need to find her a spot in a rehab. Don't bring her back to OK yet! There are places that have beds for uninsured, you'll have to beat on some doors to find one. Where is she now?

        NM, I re-read. From Baton Rouge, the first place I would call is TIRR in Houston. I think it would be closest. I know they have some beds for the unfunded there. Call them TODAY. It is the Texas Institute for Rehabilitation and least it used to be.

        You'll get her hurt if you bring her to OK at this point. I know a kid, same level, was put in a nursing home here. I can't even describe how close they came to killing him, so many many times. His arms now have irreversible contracture, and he is from a loving family that really tried. She needs rehab and to learn to direct her care before she comes back here.

        Call social services in OK today, after TIRR. See what you can get her hooked up with.

        Get prepared to fight w/ those insurance companies. Do you have her policies? I kinda think they are lying to you, a nurse wouldn't have that kind of crap insurance imo. If you don't, get them faxed or emailed to you stat.

        At 64 1/2, she may be able to get social security and medicare. I think, I hope anyway. Start calling!

        If she is above the level of medicaid, she may need to spend down. Make sure every dime goes to appropriate wheelchair and such. Don't get hasty, you need to do some research. Right now you're in a panic, perfectly natural.

        Little story-Many years ago my mom, a 48 year old uninsured waitress, had a totally disabling stroke. Lost house, car etc. BUT got excellent health care and rehab. Now lives fairly happily in a nice nursing home, at age 73, with her good friend Jesus by her side. I was so scared, and just a kid. My future husband said "Let the government take care of her. That's what government is there for."

        And he was right.

        Another lil story-My roommate at TIRR was a 43 year old mom, in the process of divorcing, when a car wreck paralyzed her at C2. Just like Christopher Reeve. She was in college, uninsured, but they found a bed for her at TIRR. Her family was GREAT at beating on doors and jumping thru hoops. Whomever in your family excels at persistence and paperwork needs to be put in charge of this job, finding her a bed at rehab and finding what aid is available to her, PLUS fighting w/ the insurance companies.

        Insurance companies deny 95% of first claims. Start appealing. You may need a lawyer. Where are you in OK? A friend of mine might be able to recommend a lawyer that would like to help.

        You'll have to jump thru a lot of hoops but this is do-able. Just don't let them stick her in some hellhole in OK until she can fend for herself mentally.

        Is she a veteran, by any chance?
        Last edited by betheny; 10-13-2008, 03:20 PM.
        Does This Wheelchair Make My Ass Look Fat?


        • #5
          Not knowing how the US system works I can't offer you any constructive advice.

          However I do know Betheny broke her neck in Texas and lives in Oklahoma so if anyone knows........

          I hope this works out for your sister and don't hesitate to come back here with any questions.


          • #6
            Regarding the financial/insurance questions: I would talk to the social worker at the hospital and go ahead and apply for disability and medicaid. If all else fails, ask the hospital if they are associated with charities that might pick up the bill.
            "The truth will set you free. But first, it will piss you off." -Gloria Steinem


            • #7
              It is critical that she go to an acute SCI specialty rehabilitation center. Under no circumstances allow her to go to a LTAC or subacute or nursing home!!! I would also strongly encourage you to get an attorney as it may be necessary to go after the agency she was volunteering for, although she may not be wanting to do this. SCI is not only fun, it is very EXPENSIVE and she will need all the programs and support she can get.

              I would strongly encourage you to call the Help Lines at the Christopher and Dana Reeve Paralysis Center and/or at the National Spinal Cord Injury Association. There are people there who can help you negotiate the maze of agencies, programs, and centers in order to get your sister the services she needs right now. Don't delay:

              NSCIA: 800-962-9629
              CDRPF: 800-539-7309

              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.


              • #8

                Thank you so much for these glimmers of hope and direction! We have felt such desperation the last couple of days, and being a long holiday weekend, haven’t had much luck in finding people to talk to. Our brother is meeting with a lawyer tomorrow. We will contact Craig and TIRR in Houston.

                We have a case worker at Our Lady of the Lake RMC in Baton Rouge, but haven’t even known the right things to be asking. We just spent two weeks trying to get an LTAC in Tulsa to take my sister, because we were told that was what she needed next, and now realize that’s not the way to go.

                There are three other sisters as well, and at least two of us have been in Baton Rouge since the day after the accident. I was there for a week and I’m heading back down (from Tahlequah, OK) tomorrow. The other two sisters are from Chicago and Phoenix. Our injured sister is a widow, and her only son lives in Fremont, CA. He was only able to be in Baton Rouge for a week. We have been doing the best we can, but just haven’t known what to ask or what to do, and we’re getting so frustrated.

                She has been drawing social security since she turned 62, I believe from her deceased husband’s benefits. I’m a retired military veteran, but my sister isn’t.

                Betheny, if your friend can recommend a lawyer that would be great.

                I have a call set up for 9:00 am tomorrow with the information specialist from

                Thank you again! I am going to sleep better tonight. What can I do in return for this forum or organizations?

                Christina A.


                • #9
                  I just looked up medicare eligibility-It said it is for those over 65, and some disabled ppl over 62. This site has a tool, you fill in the blanks and it gives you an idea as to her eligibility. I have a good feeling that she'll be eligible.

                  I'll ask my friend tonight about the lawyer. It's a long shot but worth the phone call.

                  You just take care of your sis, and keep us posted!

                  Generally, you are eligible for Medicare if you or your spouse worked for at least 10 years in Medicare-covered employment and you are 65 years or older and a citizen or permanent resident of the United States. If you aren’t yet 65, you might also qualify for coverage if you have a disability or with End-Stage Renal disease (permanent kidney failure requiring dialysis or transplant).

                  Here are some simple guidelines. You can get Part A at age 65 without having to pay premiums if:

                  * You already get retirement benefits from Social Security or the Railroad Retirement Board.

                  * You are eligible to get Social Security or Railroad benefits but haven't yet filed for them.

                  * You or your spouse had Medicare-covered government employment.

                  If you are under 65, you can get Part A without having to pay premiums if you have:

                  * Received Social Security or Railroad Retirement Board disability benefits for 24 months.

                  * End-Stage Renal Disease and meet certain requirements.
                  Does This Wheelchair Make My Ass Look Fat?


                  • #10
                    I am so sorry to hear about your sister.

                    This is an incredibly stressful time. It is wonderful that you have a close knit family that clearly care for your sister. Now is your time to fight for her. Your investment in getting her to a good rehab program will pay off in spades. Do whatever it takes to get there, and remember that the current hospital cannot transfer your sister anywhere without your approval, so just get in touch with the places that have been already recommended to you. Hopefully, they will help you to get there.

                    Transfer to a rehabilitation center that is out of state can be tricky, and your goal should be to get her to the best place and that is not likely Oklahoma (listen to Betheny). In case you need a plane to get her to rehab (not cheap... but may be your only option), there is a very useful organization that can help find for you the cheapest air ambulance option and will arrange it all for you. They helped my family when my father was in the ICU after his accident, when we had to get him out of one hospital to better one.

                    Air Compassion America

                    They organize the ambulances, flight, and critical care nurses that would take your sister from door to door.

                    Betheny's advice is fantastic. She is an incredible resource of knowledge, so read her words carefully.

                    Keep encouraging your sister every day. Tell her that she will be ok. It is way too early for you to know how much better she will get and how quickly but SHE WILL GET BETTER and things will definitely change dramatically over the next few months so always be optimistic. The comfort of hearing your voice will be so important for her, so keep talking to her. Make sure she is getting sufficient treatment for her pain, and that the nurses are checking her skin twice a day and turning her every 2 hours. Prolonged ICU stays after spinal cord injury often lead to pressure sores (in the sacral area - just above the butt). It would be wonderful if this can be avoided as pressure sores are slow to heal, can cause complications and can delay her rehabilitation. Also make sure they are giving her the treatment she needs to prevent her getting a blood clot - a very common complication that can occur after a spinal cord injury. Once she is able to interact with you more, encourage her to try to wiggle her hands/feet/shoulders ... anything.

                    Definitely get yourself a lawyer - aiming for someone with familiarity with catastrophic injury cases/spinal cord injury, and even ask them if they are familiar w/Medicare. Betheny is right that insurance companies will always fudge the truth, so never trust them when they say you aren't coverage or coverage is limited. When we called my father's insurance companies to ask if he had any coverage when he was hit by a taxi (with almost no insurance) out of state, they said no - but that wasn't true! But we probably would have just "accepted it" if we hadn't later decided to hire a lawyer. We originally hired a lawyer to make sure the taxi driver's insurance paid, but in the end the lawyer had to fight the most with our own insurance to pay! Unbelievable.... Ask for your sister's detailed description of benefits as soon as you can for every relevant policy. Or even better, work on that lawyer and they will do it for you. If she has a life insurance policy or an umbrella policy, check those. Expenses will be significant, although I think it is likely Medicare will be able to help. However, Medicare is a slow moving monolith, so anyone you can find who can help be an advocate for you is important.

                    My father was hit by a taxi last november and had a spinal cord injury, among many other injuries. He had just turned 65, so I can relate to your experience too well. We were clueless about finding a lawyer, and had other things on our mind at the time, and found someone helpful but not very experienced. Hopefully, others can give recommendations here. An experienced lawyer can help a ton with negotiating with insurance companies, hospitals and just knowing how the system works can help a lot.

                    Hopefully Betheny's friend will have a recommendation for you. One of the spinal cord nurses on this site once gave a link to a lawyer that can send you a free book about your legal rights following catastrophic injury. You could email him to ask for a copy of the book, and he may be able to recommend someone?

                    Joseph Romano (based in Philadelphia)

                    One thing to keep in mind - sometimes people (i.e. doctors/therapists) look at 65 year old people differently then younger people when they are injured. Meaning they don't always think they should be as aggressive about treating them, pushing you to minimize treatment or transfer them to a nursing home rather then an acute rehabilitation facility. So you need to remind them - your sister is a nurse (not was a nurse.... is a nurse), who was active and working and had this horrible injury while she was volunteering trying to help others. You want absolutely everything to be done for her and that includes rehab. She will get better. Make sure that as soon as she is medically stable, the doctors have the physical and occupational therapists come see her in the intensive care unit. It is never too early to start, if she is stable medically.

                    So divide up the tasks with your sisters, and start making phone calls. Ask the social workers and case managers assigned to you at the hospital to help and ask them lots of questions and if they can't answer them, ask them who they can call to help. Start emailing your family and friends to let them know that you/she will need more help in the future.

                    Good luck. Hang in there.
                    Last edited by hlh; 10-14-2008, 12:31 AM.


                    • #11
                      Check your private messages! As I said, this is a long shot, but I will PM you the contact info for the attorney I mentioned. This attorney has taken at least 1 case pro bono for a young Oklahoman with a SCI, back in the 80's. He was good. Apparently he feels the need to give back to society. I'm hoping your sister's story will move him. Fingers crossed!
                      Does This Wheelchair Make My Ass Look Fat?


                      • #12
                        So sorry to hear about your sister.

                        I found the hospital social worker to be a great help.

                        Also, don't hesitate to sue anyone and everyone involved. Contact a personal injury lawyer as soon as possible.

                        I joke that I used to be a nice person before my son was injured, now, not so nice. You can't take no for an answer. Knock on every door possible, call every person and agency you can think of. Don't give up.

                        Hang in there.
                        Ugh, I've been kissed by a dog!
                        Get some hot water, get some iodine ...
                        -- Lucy VanPelt


                        • #13

                          Thank you all for your replies. I'm back at the hospital in baton rouge. Beverly is making some progress. She passed her swallowing test and got to drink a coke. She was able to talk to me today with the valve on the vent, but it really wears her out.

                          I am very concerned about the swelling of her legs and feet. They are so big! The doctors and nurses keep saying it's to be expected. Is it? She has been on a diuretic but it has cause blood pressure to drop.

                          Christina A.


                          • #14
                            Christina I'm sorry to hear about your sister's accident.
                            I hope you find a good rehab & she gets back alot of return.
                            I'll be praying for your family. God bless y'all


                            • #15
                              Sorry I am so late joining this thread. The rule about waiting for medicare with a disability is only applicable to younger people. If your sister is already drawing Social Security she may be eligible now, but if not now she will be instantly elligible when she turns 65 with no two year wait. It sounds like she is progressing medically and it is great that she was able to pass her swallow test and enjoy a coke. Do not let them tell you about their lowered expectations because of her age. That is ageism, plain and simple if they try to pull that nonsense. While she might not have the stamina of a 25 year old she is deserving of good rehab. I am in my late 50's and have been a quadraplegic for decades now, and mostly I function independently. Lastly, I just want to tell you how lucky your sister is to have you in her corner, and what an enormous difference it will make.