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How Do I Sell My Husband to a SCI Rehab

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  • How Do I Sell My Husband to a SCI Rehab

    I'm looking for information on how to sell my husband to a SCI Rehab. My husband is a 34 yr old C3 vent patient. He is currently at a non sci rehab and the place is horrible. He spent two months in ICU waiting for an SCI/Vent Bed and after two months the insurance basically forced us to take a vent non-sci bed. That was the biggest mistake.

    We've be here for 5 months and have not yet once had a family meeting regarding our discharge plan or any discussion about our journey. There has been no teaching and no education at all. I've documented all of our complaints, mailed them certified, met with probably every supervisor including the patient advocate and CEO.

    I've used so much energy trying to document and stay on top of the basic health care that he needs in addition to trying to aimlessly find my way through the maze of resources to get my husband home. All of the things that I thought the Rehab get's paid to do.

    To Date our billing is over $300,000. And the extent of my husband's day consist of 20 min of range and motion upper and 30 min lower, occasionally getting into a hoya lift to a geri chair and back to bed. No wheelchair and or any type of adaptive equipment is available. They haven't figured out how to manage the constant neck pain that my husband experiences, the nurses are constantly badgering him about taking oxycodone, he stopped taking it for about 10 days and just suffered and wasn't even able to lift his head off the bed because he they made him feel like he was some type of narcotic junkie. Instead of exploring other options for managing his pain. We requested a Pain Management Specialist to consult however, they had a psychiatrist come in on two occasions but he didn't offer any remedies, he stated he wasn't a pain management specialist however, he was interested in pain management????

    It has now become an extremely Hostile environment for my husband and I. I was told by the CEO that I was too demanding. I am terrified to death to go from this facility to home. They don't seem to have any experience sending patients home on vents.

    In October I visited one of the SCI rehabs here is Boston and after they spoke with my husband's case manager, they said that my husband was considered a Chronic Vent Patient and is not appropriate for their program.

    At this point I'm willing to Go out of state, I would prefer to stay here in MA so I can deal with the home mod issues, but I don't know how to sell him to a SCI rehab.

    I'm just now connecting with Home Mod resources and recently had our home evaluated and I'm waited for proposals.

    I'm extremely depressed and feeling totally
    overwhelmed and burnt out and I'm not home yet. I don't know what else to do and I have no help, it's just me. Any suggestions for getting him moved would be greatly appreciated.

  • #2
    Health South--- Monroeville

    Please contact Gino Boneti at HealthSouth in Monroeville. If Pat Zanarini is still there, she is the intake nurse of the vent program. I have had many people go to this facility with outstanding outscomes, even after being turned away by Shepherd Center and Craig Hospital. Alot turns on insurance but it is worth a shot.

    John Fioriti of Boston NSCIA knows Gino. If you have any problems, give John a call.

    I sent this to you in emailformat and cc'd it to John as well as another individual who should be able to assist.

    Good Luck
    Every day I wake up is a good one


    • #3
      Is this a case manager at your health insurance co. or employed at the facility where your husband is currently being treated? Do you have a case worker at your insurance company? Have you spoken with any other facilities currently in your network? Does your medical insurance include out of network coverage?

      Your husband is most fortunate to have you as his advocate. I know how frightening and exhausting this responsibility is. I do not have any knowledge or experience about vent dependency, other than some facilities are more successful eliminating this need. I do not know what sort of challenges you will face trying to get him in a rehab center that specializes in SCI after this much time, but it would be more benficial for both of you if you could accomplish this. If possible you may try focusing your energy on moving him to an appropriate rehab instead of trying to get what you need where you are. It sounds as if you have exhausted all resources where you are.

      You have already accomplished the most important aspect of caregiving by educating and involving yourself in his care. It takes incredible persistance to keep your foot in the door when everyone keeps slamming it. I do not know how much help I can be, but if you would like to e-mail me I will try. Kathy


      • #4
        mccc2, perhaps this is a case that Christopher Reeve can help with. After all, he and Dana went through what you are going through. The insurance company should understand that they will pay much more if your husband is in a bad facility. I will ask if Patricia Morton (who works with me) has any ideas. Her son Peter who is vent-dependent went home. This is a solvable problem.



        • #5

          Here are a few things that I would suggest. Most of these have been previously suggested, but you don't indicate if they have been followed through or not yet:

          -meet with the hospital patient representative or advocate. If there is none, then make an appointment to see the hospital CEO. Have details of all the times you have tried to meet with the team or get someone on the team to talk with you and your husband. Be as specific as possible (names, dates, etc.).

          -insist upon a patient/family conference with the entire team to include the internal case manager, your insurance case manager, physician, nurse, social worker and therapists. Is this unit CARF accredited? If so, if they refuse the conference please call CARF. The CARF standards hold a facility to the standard of including the patient and family in decision making, keeping them informed of and involved in the plan, and also to having a proper grievence procedure that is actually followed.

          -ask to speak to the supervisor of the person at the SCI center that is turning you down. Ask about their admission process and appeal procedures. Make it clear that you do not expect vent weaning or long term placement with them, but a rehabilitation program of a set length (ie, 6-8 weeks) and that you have not received any SCI rehabilitation to date, in spite of being in a "rehab" center now.

          -talk to your insurance case manager. If they refuse to pay for a different or out of state program, speak to their supervisor. If they still refuse, suggest you contact the office of Joseph Romano, Esq. You can find him on the site under their "Legal Issues" forum. He is an excellent advocate for people with severe disabilities and an expert in getting insurance companies to pay for appropriate care. His office also can provide you with a copy of his free book that everyone with a SCI should get that has private insurance.

          -If your husband is a military veteran, then you should contact the local PVA national service officer for help in getting your husband to the appropriate VA SCI Center ASAP.

          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.