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Thread: care hours - vent

  1. #11
    Honestly, if they would give me a time sheet with the allowed times per care and it did add up to their number, I would not argue at all. The thing is when I asked for this, they never provided it. It's like they just pulled the new number out of nowhere. how can they reduce it especially this much with no justification. I even turned in a time schedule of my own which did add up to the current hours allowed.

    What I also don't get is they make it sound like the caretakers constantly have to be doing something in order to be paid. We all know that everyone who does a regular eight hour shift at work is constantly working right. They're not on the phone with their friends or surfing the Internet.

  2. #12
    In CA, it is a social worker, not a nurse or doctor, who determines who much time you get for your needed care. They are generally clueless about what the care involves, but only use a chart they have been provided that tells them how much time stuff should take.

    I spoke once to the group of SW for IHSS in my county who decided this about the details of care needs of those with SCI. They were amazed when I told them that their chart showing bowel care should take no more than 15 minutes was totally unrealistic for the vast majority of people with SCI, and explained in detail what occurs during bowel care.

    It is important to find out in your area how these things are determined, to challenge them (most of this type of thing is public record or can be obtained through Freedom of Information requests), and challenge it, even if it means having to go to the press. Legislators need to hear about the differences in costs to the government of paying for sufficient care in the home vs. nursing home care (which may be the only alternative for many without sufficient PCA hours). I would also suggest membership in and getting active in organizations such as your local ILC and ADAPT.

    (KLD)

  3. #13
    Senior Member zillazangel's Avatar
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    We get zero assistance from anyone, anywhere, health insurance, gov't programs, nada. I am Chad's only caregiver 24/7 and it is tough (and no, there aren't exactly loads of family or friends volunteering, even when we ask...). But there's really no other choice since we do not have $$ to pay out of pocket. So no advice, but loads of sympathy here.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  4. #14
    Quote Originally Posted by zillazangel View Post
    We get zero assistance from anyone, anywhere, health insurance, gov't programs, nada. I am Chad's only caregiver 24/7 and it is tough (and no, there aren't exactly loads of family or friends volunteering, even when we ask...). But there's really no other choice since we do not have $$ to pay out of pocket. So no advice, but loads of sympathy here.

    wow, that is unbelievable. Can I ask why? Or how this is possible? Who takes care of supplies?

    I will keep pushing for an answer to the hours. There has to be a formula/calculation that they use. Although, they did say that each member is different so times may be different.

  5. #15
    Most state/county programs are needs based. In CA, if you are not eligible for Medicaid, you are not eligible for IHSS, so if you have a job (or your spouse has a job) you are likely not eligible for any assistance in caregivers. My mother is retired, but due to her retirement income and IRA, she is not eligible for any state funding, so we completely private pay for her PCA hours (around 62 hours per week). Fortunately there is enough money for this, but that is not true of many people who are middle or even lower middle income. Very few insurances pay for non-skilled care such as PCA care.

    Not sure what supplies have to do with PCA care although if you are getting skilled care through a home health agency they generally are responsible for your supplies as well. That is not true for IHSS or similar attendant programs. You still need to either private pay for supplies not covered by your Medicaid or Medicare (and order these on your own). This is what my mother does too.

    (KLD)

  6. #16
    Yes, the program/agency covers for all my supplies and everything else. That question was for zillazangel. I know I would not be able to afford my supplies if I have to pay out of pocket.

  7. #17
    What is your insurance? Medicaid? Medicare? Worker's Comp? Private Insurance? Who pays for your PCA hours?

    (KLD)

  8. #18
    Senior Member zillazangel's Avatar
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    Quote Originally Posted by hyisbm View Post
    wow, that is unbelievable. Can I ask why? Or how this is possible? Who takes care of supplies?

    I will keep pushing for an answer to the hours. There has to be a formula/calculation that they use. Although, they did say that each member is different so times may be different.
    Chad has private insurance through his job, on which he is actually on long term disability at the moment. But he still has health insurance through it, and its blue cross blue shield. Everything I do is considered "custodial care" .... which is ironic, because if we had an agency, only a registered RN could do things I do like bowel care, changing his suprapub, etc. I have joked often with others in our shoes that it is likely that brain surgery is considered custodial care in their opinion.

    Back when Chad and I were not married, he qualified for state aid through something or other, I forgot what it was. But they would come out once a year and evaluate his needs. The max was 40 hours per week and that's what he always got. Then being the fools we were, we got married and my income blew all possibilities of assistance out of the water. I have a relatively high income, but care is extremely expensive and fraught with difficulty when you have a small child in the home, etc etc. (we have had some hum-dingers apply for the job - a child molester who'd been in jail for it ... no joke, I was I was kidding!!).

    He gets all of his supplies, medications, and medical care through his health insurance, so that's covered, other than out of pocket expenses (which are substantial even with good insurance).

    Good luck .... we completely know what you are going through.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  9. #19
    Senior Member Van Quad's Avatar
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    zillazangel you are an angel. Many couples I know can't afford the downside of getting officially married. Those that do have tremendous pressure put on their relationships by being forced to be sole caregivers. And the system could care less.

    My wife and I were the only couple in our social circle to be 'officially’ married. All the other couples we knew lived together but had their mail dropped elsewhere. That was the situation in Ontario.

  10. #20
    Senior Member zillazangel's Avatar
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    Thanks vanquad, it is a rough gig, but I love Chad, so I do it. I'm not a saint, trust me, but I do what has to be done. In retrospect, we shouldn't have gotten legally married, it really screwed up our finances. But on the other hand, there is just something about being legally married that makes us both really secure and happy because it ensures that I am have legal rights in all sorts of regards.

    It's funny when people tell me I shouldn't do his care, or I shouldn't have a full time job, or whatever. I want to say back "what part of my life is optional?!" My job pays the bills, I have an 8 year old son who needs care, attention, love and a good mom, a disabled husband who can't do anything for himself at all (no movement/sensation below shoulders), and the house doesn't clean itself!! Even when I am sick or have a broken foot (I broke my foot last January, no weight for 12 weeks on it, seriously) - I have to make do somehow. And we do.

    I can only do this because of Chad though. He is so good about everything and never ever makes demands on me that are unfair. Demands, yes - you can't make your bowels behave on cue, but things within his control, he does and makes me life easy where he can. What little that is, which means alot.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

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