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

  1. #11
    I called the case manager yesterday and gave her our choice. It's close to home so I can get there everyday, they have a good ratings, people in his age bracket that he can communicate with, the residents seem happy, the staff are employees, and most importantly the PT OT have sci rehab experience.

    I know it won't be home, but it's a stepping stone. If he really hates it he has to be strong enough to roll 1.2 miles home -- and I checked, the way is accessible.

    The rehab case manager is pushing me for alternates but frankly there are none -- this place has an opening that correlates to his discharge.

    The case manager and social worker have offered no help other than letting us know how many days he has left there. I have initiated the only contact we have had and I've got non-answers to everything asked.

    The discharge meeting is this Monday (11/6). I am going to ask them about his transportation to the facility and exactly what home care his insurance would have paid for if he did come home (questions they have not really answered). I have other questions for Drs and PT staff regarding meds and tx plan.

    Can someone please suggest other any questions I should be asking of the case manager and social worker at the discharge meeting? I have to assume they will be more supportive and forthcoming with information in the presence of other staff.

    I am so thankful the nursing and PT staff is not cut of the same cloth at this center.

    Thank you!

  2. #12
    I am glad you have been able to find a place that meets a lot of your criteria that isn't very far from you. Honestly, I can't believe that it is only 1.2 accessible miles away.

    Many of my questions would be more focused on the medical stuff before discharge. Clarifying all of his medications, follow-up appointments with a physiatrist and ideally... the name and a follow-up appointment with a urologist they recommend that works with patients after SCI/TM. For us at discharge, the case manager helped set up all of the home delivery of the needed equipment and supplies. I don't know if there are things that you have ordered (eg. wheelchair, bathroom equipment etc...) or if you have left that for the nursing home. Acute rehab/rehab hospitals tend to have better therapists for doing wheelchair seating.

    I wish your son much luck with his recovery, and I hope he will continue to improve so he can go home soon. Perhaps check in with the social worker about all state/local programs for funding assistance for home modifications, find the address of the local Access living site in your/your son's area, and start looking into all local resources that might eventually help your son to live independently. This can include everything applying for transportation programs for those with disability (we have a Paratransit program in our area that will drive my father to most doctor's appointments), finding all programs that provide assistance in the home (both through his insurance, through local programs), thinking about modifying a vehicle so he could drive, think about what basic home modifications could be done. I agree with asking the SW/CM about what home services he will qualify for. Make sure he gets on a computer as soon as possible to do more research himself.

    Does he have an outpatient neurologist who was following him previously who can help with the work-up? This is very important, as I'm sure you know. Is he near a major academic center that is known to have an excellent neurology program? I would start asking for recommendations for the best place to go. He may have an underlying issue that may explain the neuropathy and TM. For example, some rheumatologic disorders like lupus and rheumatoid arthritis can have neurologic problems suddenly happen like your son's. Did he ever have a biopsy of one of his nerves? Sometimes that can be helpful.

    Anyway, this will be a busy week perhaps, and I am wishing the best for you both.

  3. #13
    Good suggestions. The meds were on my list and the neurologist, physiologist, but not the others. Thank you!

    I did not walk or bike the 1.2 miles but there are cut outs at every crossing. I am sure it looks much different in a chair vs a car and probably further when you add in going up to corner to corner to cross. Hmm. Does google maps have a walking maps for wheelchair users? Now that would be a terrific iphone app!

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