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Thread: C5 complete son is coming home and I don't know where to start

  1. #1

    C5 complete son is coming home and I don't know where to start

    We live in Florida. Every resource we have been referred to requires he was injured or is a vet but he is neither, he has Transverse Myelitis. So far I cannot find any help for him so everything he needs I am buying as I am able -- we will have to make due with an outdoor shower for some time.

    He is indigent and thankfully already receiving Medicare and Medicaid due to another disability.

    Does anyone know what Florida Medicaid and Medicare provides regarding home health? I am terrified that I am going to have to move in with him (he cannot live with us due to space and pre-existing emotional problems) and tend to him round the clock. Currently he needs assistance (cathing, meds) at least every 4 hours and is able to do little for himself -- I am not in any condition myself to handle this alone.

    I am not working right now but I need to return to work eventually.

  2. #2
    Senior Member
    Join Date
    Sep 2010
    Belmont, CA, USA
    Check with Medicaid. I know it is different in every state, but in California if you have Medicaid (It is MediCal here) you can get In Home Support Services to help with home care needs.
    Wife and Caregiver, husband has Secondary Progressive MS, wheelchair bound, unable to work, MS still progressing.
    Mother of 2 active boys!

  3. #3
    Where is your son going for his rehab? The social worker and/or case manager there should be linking you up with any available resources. This should also include the local Independent Living Center, which can help you with those that he is eligible for. You need to insist upon getting this information, and they should be having a discharge planning conference with his entire team to help you make these transitions.


  4. #4
    Thank you for your responses.

    I will investigate his Medicaid. Since moving to Florida we've been jokingly referring to it as a "rusty shovel", hopefully it'll prove me wrong! I will ask these questions of his team today. We have not had the discharge planning meeting yet so maybe I am panicking too soon, but he is suppose to be discharged within a week -- that seems pretty soon!

  5. #5
    Are there any Multiple Sclerosis advocacy organizations that you could contact in Florida? Often folks with TM will find some support in that arena.

    Very frustrating to hear you experience. I've never heard of discrimination based on your diagnosis.

  6. #6
    I am back here! His discharge was postponed, thankfully, and I got some answers that are pretty unsettling.

    No help from any organization -- every one I have written to or phoned replies with "our funds are very limited and restricted to accident victims, etc., etc.".

    I found out from the case manager that we could apply for the Florida Medicaid Waiver for help at home. There are two programs. The first has no monetary cap and a minimum of a 2 year waiting list. The second has a $14,000 a year cap and has an undetermined wait list. I applied.

    Everyday that I care for him at rehab (I am there sometimes round the clock and sometimes 10-12 hours) I realize I cannot do this all alone for an undetermined amount of time. I am exhausted and physically hurt now and I am helping him with the assistance of many other people.

    I am horrified at the idea of him having to go to a nursing home at his age. If anyone has any suggestions, please share them!

  7. #7
    Senior Member
    Join Date
    Jan 2003
    Madison,Wisconsin, USA
    how old is your son? What is he thinking re discharge?

  8. #8
    I don't know much about Florida Medicaid, but the Fed's recently cracked down on them for locking up kids.

  9. #9
    He is in his late 20's. As far as his plans for discharge home he expects me to care for him and/or to arrange for care at my home or his. He does not want to go to a nursing home. He cannot live in my house, it is not practical in any way. I will have to live at his, although he prefer to live at my house, it would cost many tens of thousands of dollars that I do not have to put on an addition to make room for him if I could get a variance for a set back, etc. He has always been very dependent on me and this was something we had been working on this past year. He was living on his own for the first time in a place I had secured for him which except the bathroom is pretty well suited.

  10. #10
    Senior Member
    Join Date
    Jun 2008
    Feel free to ask us things if you have questions about his care.

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