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Thread: How do you pay for care and determine when it is time to get it.

  1. #1
    Senior Member
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    How do you pay for care and determine when it is time to get it.

    If you receive a spinal cord injury before starting your career or having any money of your own how do you pay for assistance after becoming disabled? When I broke my neck was in college, living in the dormitories and working graveyard shift at Denny's.

    My parents (mom in her fifties and dad 60) did not have any money and neither did I. There were two things I knew, could not live with my parents and could not count on Social Security, even though have paid into it since 1974.

    Parents never modified their house, had to pop 2 wheelies to get in the front door and took my showers outside in January with the garden hose. In 35 years they never put a ramp to the front door until my dad needed one.

    The Christmas tree and holiday dinner was always on the back porch and they only put a ramp to the porch after relatives saw me having to pop a wheelie in and out when they were visiting. Believe it was so obvious that my parents got embarrassed.

    Finished my degree in Business Administration and couldn't find an entry level management position so with the help of Vocational Rehabilitation got a degree in Computer Science. Got my foot of the door with computer skills and then found a well-paying, stable job as a Contract Administrator and a great place to live. Which is a whole story unto itself.

    Have no family except one brother who is 6 years older and lives 200 miles north and we have different lives.

    What do other people do about caretakers as you age when you have no money and a C6 complete injury?

    Know the older I get the more difficult it will be and when, where or at what point do I draw the line?

    What have others in my situation the? Have enough money to live but don't have enough money to pay someone to help me.

    The Republican tax plan on not allowing deductions for medical expenses really does the people with disabilities another disservice.

  2. #2
    Cris, do you own your own home/condo/apt.? Do you rent? Do you have more than one bedroom? You might be able to find someone who would do part-time PCA care in exchange for board and room and a small monthly salary. This is what my parents did for my mother's care when it got too much for my dad. This might appeal to a student as long as you can fit your care needs around their school schedule, or someone who has another job as something like a HHA or CNA during the day and can do your morning and evening care (I assume this is mostly what you would need).

    If you are working for the federal govt. you can also sign up for long-term care insurance, which I believe can also be used for in-home care. This group plan is available for all federal employees, and does not exclude those with existing health conditions or disabilities like private long-term care insurance does.

    (KLD)
    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.

  3. #3
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    what level are you I am 67 I still work but not like I want to but I do work from home I am pretty indepent have caregiver 1 hr a day 5 days a week I am c6c7 I drive cook I live alone and have for 13 year

  4. #4
    According to his profile, the OP is 57 yo and is C6 complete. It sounds like he is looking down the road, not right now, for care needs as he ages.

    vjls, do you private pay for your caregiver? Do you live alone?

    (KLD)
    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.

  5. #5
    One thing to consider is retirement. On the first day of retirement contact Social Security and apply for SSDI. It would be pretty much automatic eligibility due to your injury. A few months later you will also get Medicare. However, as nurse indicates apply for long-term disability from your employer if it's available. (I didn't and found out after retirement that you could not get it if you were paralyzed - a medical check is not required when you are an employee in a group).

    Next, begin evaluating all the transfers you need to do now and do research on all sorts of equipment you will need to stay independent: transfer boards (several), techniques for toilet transfer, shower techniques, shower wheelchair, etc., etc.

    Preparation is so important for an aging person, so that you can "hold-off" hiring someone until you need it. You may qualify for equipment while you are still working as your health insurance may be better than Medicare!

    We are two elderly paras and your question is so important! At this point we have purchased bathroom equipment not covered by Medicare, and got power beds that were covered by Medicare, along with a co-pay. The power beds allow one to do "gravity transfers" and help preserve the shoulders.

    Are you driving a car? Schlepping a wheelchair into a car is very tough on the shoulders. We had to go to full size vans many years ago - our jobs required field work - but the 6 way power seats let us do the gravity transfers during most of our work and into retirement.

    If your employer has deferred compensation or other savings plan get into it big time.
    When I recently needed home care therapy, I found that Medicare can cover several services for a limited, but helpful, period of time.
    Hope to hear from you as I don't know if any of these suggestions will be appropriate for you, but you have raised a great issue to explore. Think of this whole question as Transition Planning rather than the need to make a decision on attendant services. I think you will know when that's needed.

  6. #6
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    The house am currently living in is a 2 bedroom one bath with a roll in shower, a "computer room" which has counters on 3 walls that can be rolled under and shelves against the fourth wall.

    Also a one car garage but the van will never fit in it so park perpendicular across the driveway. Lost three quarters of my carport the first year after buying the house and the last quarter the second year from hurricanes. Did pick up a working traffic signal which hangs in my living room now.

    There is a guest house with its own fenced in yard inside my fenced in yard. It has a full kitchen and bath, washer dryer hook up and a walk-in closet. Also has its own electric meter and billing address and is currently rented. Nice guy, don't see him much he just came back from a month in Brazil.

    Have another lady who comes in and does the laundry, the sheets and is supposed to run the house like a "Mrs. French" but she still needs reminding and supervision.

    Applied for SSI and then SSDI when I broke my neck in 82 then when I was working didn't receive it and after retiring it started again.

    After retiring disabled from the Department of Defense would I be able to purchase the insurance you're referencing?

    My whole intent was to have my caretaker able to live in my backyard I'm just deciding when to do it. My gut tells me the longer I put it off, and doing it myself the better it will be in the long run.

    It's just that some days are much more difficult and I have a problem determining between being lazy or slothful vs. really need help because of my disability. Just another one of those holes you fall into every so often.

  7. #7
    You must purchase the federal long term care insurance while still employed. That should have been offered to you when you had your retirement planning meeting with HR.

    Sounds like you have the set up for managing a live-in caregiver. Can you afford to not have the rental income from your guest house?

    Meanwhile, I would agree with Triumph that you should look into things you can get as far as equipment or home modifications that would make your life easier. Don't wait until you need them...anticipate what you may need to work on getting now. A ceiling track lift that you can operate yourself would be a good idea for bed to wheelchair and also bathroom transfers. Even if you get one that requires a caregiver to operate (cheaper), it will be easier to find a good caregiver with that available rather than requiring them to do heavy manual dependent transfers.

    (KLD)
    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.

  8. #8
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    Quote Originally Posted by SCI-Nurse View Post
    According to his profile, the OP is 57 yo and is C6 complete. It sounds like he is looking down the road, not right now, for care needs as he ages.

    vjls, do you private pay for your caregiver? Do you live alone?

    (KLD)
    yes mam I pay out of pocket for 1 hr a day 12.00 and 5 days a week helps me transfer so I can bathe get dresses and house chorses I can/t been with me 2 years yes mam I live alone for 13 years

  9. #9
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    How expensive would it be to run a Hoyer lift from my bedroom to my bathroom shower? If I cut a hole in the bathroom/bedroom wall it would be about 5 to 7' straight shot in and out.

    How would that work, would I transf to a bench or just stay in the Hoyer lift and how will I find someone to install it?
    Have never used one before and was wondering how they actually work.

    One of the obstacles is I do not accept help well. Also do not see the need to change my transfer routine to using a board, at least not for another 10 years or so. As long as I can do the transfers myself Why would Iwant to tote around a sliding board? Is it not better healthwise to do it myself?

  10. #10
    Hoyer is a brand name. Most likely you would do best with a SureHands ceiling track lift, using a SureHands Body Support sling (it is the easiest to put on yourself). You would need to get one with both a lifting and lateral motor system to use it independently, which is more expensive. You would need to be sure that cutting a hole in the ceiling over the door to the bathroom could be done (it may be a load-bearing beam there). Most people transfer to a shower/commode chair or toilet seat rather than staying in the lift for showering. The motor is not designed to get wet.

    https://www.surehands.com/products/s...-body-support/

    https://www.surehands.com/products/c...installations/

    https://www.surehands.com/products/ceiling-motor/

    There are other companies that do home installations, and most can be fit with the SureHands body support sling. Other companies you may want to explore include BarrierFree, Prism (formerly Waverly-Glen, which has its own version of the SureHands body support sling), Van Care, Guldmann, and BHM (which apparently has been bought by Arjo-Huntleigh), and Liko (bought out by Hill-Rom).

    http://www.barrierfreelifts.com/en_c...nilift-udl.php

    http://www.prismmedicalinc.com/independent-lifter.html

    http://www.prismmedicalinc.com/c-625...ling-lift.html

    https://www.vancare.com/

    https://www.guldmann.com/us/

    http://www.arjohuntleigh.us/products...ts/maxi-sky-2/

    https://www.hill-rom.com/usa/Product...korall-242-ES/

    Some companies only do institutional installations (Arjo does these almost exclusively). All companies have vendors who will come to your home, give you an estimate and bid and can arrange installation. Only deal with a company with a local vendor who can also provide service, if needed, for repairs, etc. Costs for a system you would need would most likely be between $8,000-10,000 installed. You can sometimes find used systems for sale on eBay, so once you find the system you want, you might shop there too, although you would have to get a competent installer on your own doing this.

    Doing depression type transfers doesn't require any equipment, but they are hard on your shoulders. Shoulder problems are one of the most common problems to occur with aging in people with SCI. You may be able to do them now, but even using a slide board, in the future your shoulders will thank you for using a lift, and you may not be able to do these independently as you age. Using equipment lets you maintain your independence; they are tools for remaining in your own home and not needing as much caregiver assistance as you age.


    (KLD)
    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.

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