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Thread: Help finding the next 100 days of care in Tampa area

  1. #1

    Help finding the next 100 days of care in Tampa area

    It's come to finding a "skilled nursing facility" for my 27 y/o transverse myelitis afflicted son that has resulted in his C5 paralysis.

    I have about ten days to find the best possible place that has some spinal injury experience so he can gain the strength and skills to finally come home. He's used all the sub-acute days but Medicare will pay for up to 100 days in a skilled nursing facility with 1.5 - 3 hrs of daily therapy.

    The referral sites don't list specific care. If anyone has any recommendations anywhere in the Tampa Bay area, please let me know. Meanwhile, I've got a map up and am making phone calls and am ready to make appointments. I'm making very little progress.

    To answer some obvious questions: He is not a vet. He has made little progress in rehabilitation due to health issues (extremely low bp, and sedation from a mix of meds that he fought and fights to give up or reduce). Due to my own physical limitations I cannot be his only caregiver. No other resources are available. I have applied to private entities, he is refused because he was not injured or told there is a long wait list for review of application. Although he has Medicaid and Medicare and is on the Medicaid waiver wait list -- it may be years. I've been through this with another loved one and know I have to be there, on-site, every day.

  2. #2
    How is he on Medicare already? This normally takes 2 years from onset of SCI to get (tied to approval for SSI or SSDI).

    You are unlikely to find a nursing home with any significant SCI experience. The social worker or case manager at the rehab center where he is should be helping you to find a facility if that is his only option. They should have the incentive to do this, since if that is the discharge plan, they may have to "eat" his days continuing in the rehab setting until a bed is found.


  3. #3

    He has Medicare and Medicaid due to a non-related disability, several years prior to the paralysis.

    I am starting to get the impression that the job of the case manager has changed to get the patient discharged before the benefits run out. When I asked the case manager for help she told me because we don't live nearby she couldn't make any recommendations. I've been wondering what would happen if a bed wasn't ready when his discharge date came up or what if I had not found someplace suitable.

    I've been using in combination with the centers websites to see if they specify anything about sci and then calling.

  4. #4
    I'm kind of uncomfortable w/ him laying there gorked but fighting dosage reductions of only pain meds. Was he an addict of any type, ever? I've had a milion ppl say to me "On the plus side, you probably get good drugs now!"

    Good luck. Is his skin looking ok? He needs to be turned regularly. He might be able to do it himself eventually.

    Seriously i would watch the drug thing. They will complicate an incredibly complicated ordeal. He needs to be focused on getting better, not on getting high. His pain may be godawful but rehab is too tough to do's a real fine line.

    You need to call the Chris Reeve Org on Mon imo. They're pros at this.
    Last edited by betheny; 10-27-2012 at 09:35 PM.

  5. #5
    He has been living with uncontrolled pain for the past 5 or 6 years (peripheral nueropathy). I would not say he abuses his Rx but when you live with extreme pain and only have moderate relief, you don't want to make med changes unless they promise some relief. Of course the paralysis has brought new pain.

    He's been to 4 neurologists for the neuropathy, on 900mg daily of Lyrica (the insurance company pitched a fit over that), 15% lidocaine gel (custom compounded), and been to pain specialists who have told him there is nothing to be done. He was about 8 weeks into acupuncture when the paralysis hit. He takes antidepressants and anti anxiety meds which are some of the meds they just reduced a lot. The anti anxiety med helps with the flaring of the peripheral neuropathy.

    He got a pressure sore on his coccyx in the hospital. It was discovered upon admission to rehab. I was so paranoid about his feet always riding up on the end of the bed I did not see it coming. It may have opened up on the very long ride (6 hours) in the ambulance -- not sure. Its been well controlled and healing well.

    I went to visit three places yesterday. One has sci people in the past 12 months. I keep working the list.

    I tried calling Chris Reeve Friday but think they may have bailed early due to the impending horror-cane and filled out a form on the website.

  6. #6
    I sympathize with the difficulty trying to find a facility far from his current location. We had the same problem with our case manager/social worker. My father got hurt in New York, while on vacation. So the case manager would only refer us to local facilities in Manhattan and wanted us out as soon as possible. She didn't care that we didn't live in New York. They didn't give us any advice on looking for facilities, how to get back to home... nothing. I didn't understand how the system worked at the time, and was pretty frantic trying to work out details before they threatened to transfer him to a local nursing home.

    But sometimes the case managers are actually nice and are keeping track of his Medicare days... be sure you know whether or not they are starting to charge you because he ran out of days. Is he now going into his lifetime reserve days?

    That's a good idea to ask the facilities you visit if they have had a SCI patient. I would glance at the Medicare reviews online and then grab the ones at the top. I would ask to talk to the therapists who would be most experienced with SCI that he would work with and try to find a facility that would be willing to do 3 hours of PT/OT at day. Push push push....

  7. #7
    Thank you, I have been using the site to find possible nursing homes. It's good that you can only pull them up by a specific rating but its too bad you can't search according to care. There are other sites that let you search by dementia (lol) and you can call for additional assistance but as soon as they find out the prospective admission is under 55 -- they won't provide any info.

    I've been asking the places I'm visiting about current and prior sci patients and staff experience, if the physical therapy staff is contracted or employed. I want to be sure there is some continuity. The experience and a decent rating is paramount. Even if I've got to go farther it would be worth it to get a good result.

    I have no idea about his insurance usage so far and if he starts incurring bills, it's unlikely they will be paid. He is destitute. His therapists, doctors, nursing staff are terrific but the case manager and social worker have been as helpful to him as a pair of roller skates.

  8. #8
    It sounds like you are being really thoughtful about this. Your son is lucky to have you as his advocate. You are absolutely right that you need to be there every day to fight...

    I agree with the nurse that none of the nursing homes will be very experienced with spinal cord injury. So I would do what you're doing and keep visiting and asking good questions.

    That's just awful that some turn you away over the phone when they hear his age. I'm sure they are not supposed to do that.

    Btw - forgive my nosiness, but why does he have neuropathy at such a young age? Could the transverse myelitis actually somehow be related to whatever caused his neuropathy?

  9. #9
    We think the transverse myelitis is definitely somehow related to the neuropathy but not sure how yet. He has had lots of tests over the last four years regarding the neuropathy and the resulting pain has caused him much anxiety and depression.

    He's been tested for everything -- somethings twice. Undergone plasmapheresis and IVIG. Although he was seeing a neurologist in acute he's only been seen once in rehab so the next investigative phase has to be done on an outpatient basis once he's settled into a facility.

  10. #10
    He sounds like a young woman I met once. She had Gulf War Syndrome, of all the nightmarish useless diagnoses.

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