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Thread: care hours - vent

  1. #1

    care hours - vent

    well, I don't even know where to start but I'll try to be as clear and brief as possible.

    The care program I was with for the last 10 years suddenly got eliminated back in June. I was told the transition into the new program was going to be as smooth as possible. Obviously, that was too good to be true but the issues were resolved. Then, one month into the transition I get a notice of reduction and my care hours. As before, I was looking for a reduction of 1-2 hours but was totally surprised when they wanted a reduction of 21 1/2 hours. Being the understanding, caring, willing to help, person I am I tried to work with their supposedly member advocate to get a resolution without having to file an appeal.They managed to catch me off guard and drag me past the 45 days to appeal. Of course, I did not realize this until I was at the appeals hearing and the judge said "he can't do anything because it's past 45 days."So, my appeals was dismissed and I am now stuck with the reduced hours until I can appeal again (I would have to request a new evaluation and then file appeals letter again). This would most likely take a few months. I am kicking myself like crazy over this. I am such a cautious person and can not believe I let this slip by. I truly did believe that they were going to try and work something out with me. Now that I think of it, I think this was just one of their game plans. I guess that's what I get for being willing to work things out with people. I have not felt so helpless in such a long time but I am just so angry right now at both the program and myself. So, any kind words or advice would be appreciated. Try not to beat me down too much as I already did it myself.

    Just more info as it might be brought up.

    I'm a quadriplegic with a C4-C5 injury.
    My hours went from 55 down to 34 1/2.
    My mom and girlfriend are my caretakers.

  2. #2
    Senior Member Van Quad's Avatar
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    Just to clarify, are you a C4-5 on a ventilator? I'm a C4-5 and I receive 6 hours a day.

    Expecting your girlfriend & mother to be your care givers, in my opinion is criminal. But that's the way it is in British Columbia and Ontario as well. They expect you to wear out your parents and spouse.

  3. #3
    No ventilator. But, when I first got injured I started out with over 60 hours. Over the years they have reduced it little by little.

    We understand the issues with having family/friends as caretakers. My girlfriend and I talk about it every so often about what we should do and when. With our situation right now, this works out for us and our lifestyle. One of the main benefit is the flexibility we have. I just do my best to give her her space and time alone so she can get a breather.

  4. #4
    Your profile doesn't tell anything about you, like where you live.

    These programs are run by the state or county where you live, and they are an easy target for budget cuts by government looking at horrible budget deficits. In CA the Governator has been gunning for IHSS for several years, and only very strong and organized publicity about this by both PCAs and those who need their services has held back the most serious cuts. Most of my clients get 6 hours daily MAXIMUM at your level of injury...most get 3-4.

    Until you can appeal, you can talk to your state legislator about the situation, as well as your local ILC and see if there is any organized effort to get the program changed. Making your care more organized and simplier, and doing what you can for yourself will also help to take some of the burden off your family. In CA, family is expected to provide a minium of 8 hours of care daily without reimbursement if they live in the same household.

    (KLD)

  5. #5
    Wow, 3-4 hours per day only. what you think the average is throughout the states?

    I was never worried about this issue before but now it has really opened my eyes and I am researching and learning as much as I can about these programs and especially about what's out there to help me.

    I don't really know anyone locally in my situation to see how their daily routine is. I know I am very fortunate to have my girlfriend and family members around to help. I just can't imagine how it would be if I was ever to be left in a helpless situation because I'm left alone. I sometimes tell my girlfriend it's okay that I'm in bed and left alone even just for a couple hours but she is just totally against it.

  6. #6
    Senior Member Van Quad's Avatar
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    I know several C5-6 quads living on 4 hours per day. They will try to cut your hours and if you do not fight like a rabid dog, the cuts go through. I've had to fight to keep my level of service. But I don't mind being left alone. It sure beats having someone around too much!

    Remember, fight and don't take no for an answer

  7. #7
    Well I really don't know much about this....but if I needed care and it wasn't there......I would call 911 and let them take me to hospital and tell them at the ER I need help.
    Would think that would get something done.

    Art
    Art

  8. #8
    Senior Member Van Quad's Avatar
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    As a rule, I don't hesitate to call 911. But I have several layers of backup before it got to that point.

  9. #9
    you see, that's the thing. Ever since I've been injured, I have only used the on-call nurse may be once or twice only. Every time there was an incident, we always took care of it ourselves. If there was extra cares or stuff needed, we still just took care of it ourselves. To this day, I have not been to the hospital for any skin issues or illness because of the quality of care I get. I am extremely worried about future caretakers if they go by the clock only and not quality of care.

  10. #10
    Senior Member Van Quad's Avatar
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    Unfortunately with government, if you don't use it you lose it. That's why managers get that spending feeling near the fiscal year-end. If part of the budget does not get used, it will be reduced by that amount in the new budget.

    They may have looked at your hours of use and determined that they could cut out the surplus.

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