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Thread: medicaid

  1. #1


    hi, i live in a longterm facility in a hospital. i am ventilator dependent,c4/c5 complete. I would appreciate some helpful input about a few things. i have very attentive family that would like to be able to care for me at home. I am aware it is possible to wean and go to another facility, or even go home on a vent. What can i do to help this process happen. Is there some information on how this is possible on medicaid?? I am only 21yrs old with very great support system we would like some help please. Thank you soo much.

  2. #2
    Have you contacted your local ILC (Independent Living Center)? Some have a special program designed to help people get out of nursing homes who should not be there (meaning YOU!). Even if they do not have a special program, they should be able to get you the information about what Medicaid will cover in your area, including what is available for attendant coverage and if your family can be paid for care in your state.

    Disability Advocates of Kent County (Grand Rapids CIL)
    3600 Camelot Dr., SE
    Grand Rapids, MI 49546
    Ph: 616-949-1100

    Did you complete a rehabilitation program (not in a nursing home)? Does your family know how to do your care? If not, you may want to see if you would qualify for a short stay of 1-2 weeks in an acute rehabilitation center that has ventilator care to learn how to manage at home. You may have to travel out of your area to do this. I don't know if they do this at Mary Freebed in Grand Rapids.

    Have you been through an aggressive weaning program? Most young people at your level can be weaned from the vent. Do you have a strong shoulder shrug? This is a good predictor of weaning potential. If not, I would recommend trying to get to a center which can offer you an aggressive weaning program. This may mean having to go out of state.

    Let us know what the ILC says after you talk with them.


  3. #3
    hmm didnt know about the ILC i'll check into it

    but anyway my family knows of my cares and what not because i completed rehab at U of M hospital and the current hospital im at could teach anyone to take me home but no one has the time or money for me. i possibly could wean off of the vent but this place im at is better than a nursing, the first place i'd go if im off because it only takes vented patients. which yes i understand the longer im on the harder is to get off but i dont want to be in a nursing home(a catch 22 really). also i can move my left arm with good bicep muscle but limited wrist movement, enough to drive my wheelchair and i can move my right arm but not near as well.

  4. #4
    Michigan has some good programs for home care. How old were you when you were hurt? Was it in an automobile accident? Have you explored some of Michigan's programs for homecare? Are you on a waiting list for any of them?

    Give me a day and I will look up some resources for you but I can do a better job with the answers to the questions above.

    I will check back later to see what you posted.
    Every day I wake up is a good one

  5. #5
    Senior Member taj2002's Avatar
    Join Date
    Dec 2002
    Indianapolis, IN, USA

    I would seriously look into a vent weaning program. Getting off the vent is a huge quality of life issue. I certainly would not stay on a vent because you can stay in a better facility. My husband is a C3-C4 complete and was vent dependant for 7 months. He finally managed to wean off the vent, and it was like a huge gift for me. I think getting off the vent is your first step in getting home. Why did they not wean you at U of M? It is extremely difficult caring for a vent dependant quad at home. It basically requires 24/7 skilled care. With your arm movement, you should be able to have some independence at home if you were off the vent. My husband has no arm movement at all but still manages some limited independence at home.

    You say your family is very attentive and supportive, but you also say that nobody is willing or financially able to help you get out of the facility. Maybe they are afraid of the vent situation. I think you will need the help of someone to make a transition out of the facility.

    Perhaps Cheesecake can help you locate some resources and maybe you can discuss with your family your goal to return home and see if someone is really willing to help. At your age and with your arm movement, the last place you should be is in a facility (my opinion). Life has so much more to offer you, and you have so much more to offer life. Set a goal and get off the vent. It will change your opportunities.

  6. #6
    I agree. I would work to get moved to a facility (like the university SCI center) that is experienced in SCI vent weaning (which is much different than general vent weaning done for people with COPD, etc.). I cannot imagine why you would not be weanable since your level sounds more like C5. The longer you wait, the longer it takes. This would make your care much easier at home, and you would no longer require someone with you 24/7.


  7. #7
    yes i see i need to get off the vent it'd help a ton!!

    anyway i was playing backyard football and i was 19 with no insurance.. oh ya im on no waiting list for homecare

    also about my family i have to clarify, my nurse aide that night wrote the messege not the way i really wanted..sorry

  8. #8
    Senior Member taj2002's Avatar
    Join Date
    Dec 2002
    Indianapolis, IN, USA
    You should be eligable for Medicaid. You should be able to get homecare from Medicaid. There are also Medicaid weaiver programs that could provide you homecare. You need to get on the list.

    I would set a goal to get off that vent as soon as possible. My husband was weaned at Craig Hospital in Colorado which has maybe the best vent weaning program for SCI patients. After being on the vent for 7 months, it took him maybe a month to get totally weaned. It is a slow process that allows your diaphram to gradually build back up. I am almost certain that you can get off. Believe me, it will change your life. Talk to your parents and see if they will support your goal. You sound like a neat guy with lots to offer this world. Keep us posted on your progress.


  9. #9
    i do have medicaid, i just dont seem to know how to use it and i need to know what all medicaid will pay for, if pays for homecare how much does pay, how do i get on? i still need a home also a biggy..which im sure medicaid wont do and what about all the other neccesities for a quad

    oh ya im sort of curious how do i manage without someone around, i mean even if im off the vent i still cant do anything for myself especially physically

  10. #10
    What did they do in rehab for you? As a C5, you should be able to feed yourself with equipment, use a computer and type (sititng up), and even put on a shirt without buttons. You should be able to use a phone, and get pre-prepared meal items out of the frig (such as a sandwich) and drinks. Most of my clients who are at this level live alone and have an attendant for 2-3 hours in the AM and another 1-2 hours at night. That is it. A good rehab program would teach you how to coordinate all of this.

    It sounds like you need another round of SCI rehab...not just a vent weaning program. It is unlikely that your state Medicaid will pay for an out-of-state rehab program, esp. since you had one already, but the ILC should help you learn about Medicaid and special programs in your state. Have you been in touch at all with Mary Freebed's rehab program?

    Your family will have to provide the home...either modify their current home or move to something more accessible. Doorway width and front door access are most important. An accessible bathroom is nice, but lots of people live at home without this (you can sponge bathe and use a bedside commode).

    You are right that Medicaid will not help with this, but often there are local charities that will help with some modifications if your family is poor. You also need to find out if you are now eligible for Medicare since you are 21 and have been disabled for 24 months. This may help for some of your medical expenses and perhaps even more rehab.

    Talk to the ILC tomorrow.


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