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Thread: Missed The Rally; Another Reason To

  1. #1
    Senior Member Tim C.'s Avatar
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    Thumbs down Missed The Rally; Another Reason To

    HATE BEING TOTALLY SCI DEPENDENT ON CAREGIVER!
    A little angry maybe? Fuck yes!
    Another weekend, another new, untrained, untrain-ABLE, JUST PLAIN STUPID AND DANGEROUS replacement caregiver.
    Left alone with clueless pca, could not prepare me in time, let alone drive to NYC.........and just from Long Island!
    Note; non Medicaid, no pca insurance.
    The caregiver was the ?best? the amount of $120/day, live in (all expenses paid) in NYC can offer.
    Life sucks

  2. #2
    I'm sorry, Tim; we, as a family, have been in your position too, with privately hired aides (I prefer to call them aides, rather than caregivers!) who were massively incompetent, one to the point where he almost killed my son this past December.

    I don't know what the answer is; to appeal and lobby to put in place standards of care for aides and PCAs; to endlessly interview and hire folks (who lie to your face) you think you can train and trust; to establish a wage structure based on experience? I just don't know, but it is scary and frustrating to not have the kind of help you need.

    Looks as tho you're doing a private pay? Have you gone the route of trying to find a nursing student or PT/OT student, and training them yourself?
    _____________

  3. #3
    Senior Member michaelm's Avatar
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    Join the club Tim. I could not make it because I had no wheelchair. life is just not fair.

  4. #4
    Hey Tim

    Have you tried placing an ad with a loal college/university?

    craigslist?
    Get involved in politics as if your life depended on it, because it does. -- Justin Dart

    I shall not tolerate ignorance or hate speech on this site.

  5. #5
    Senior Member Tim C.'s Avatar
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    Unhappy Liz, thanks for your interest, but NYC is a unique social-economic region...

    ........Well, particular to Long Island, and if you are fully disabled and cannot work, your former employment's health insurance morphs to Medicare, several factors work against you:

    1. If you have enough disability income you don't want to give it to Medicaid, but then you lose other benefits, long term care.

    2. If you are married, whether your spouse is capable or not, Medicare considers you to have a built-in caregiver, ergo you don't qualify for long term nursing, even if you require 24/7 care.

    3. Nursing/ Caregiving agencies, ie; Bayada, are cost prohibitive for extended hour, or 24/7 service. You must then revert to the sub-culture of the non-certified caregivers, as discussed below.

    4. Baby-boomers, the so-called "greatest generation", and the increasing life span trends, have driven the demand greater than the supply of these caregivers. Damn widows don't mind spending $150 and up per day just for a COMPANION CARE!

    5. These "caregivers", are typically undocumented foreigners, expired tourist visa, non SS number, and mostly from former Soviet Union countries looking to make "big american" money. As such, they got the market share, and $120/day for live-in gets you squat.....bottom feeders....PCA'S that just as easily quit before you fire them...........Hospital aids seeking xtra hours just want to sleep.........local univs, and college students rather work at Starbucks, or the malls instead of inserting suppositories.

    Really, it's the high proliferation of the former USSR immigrants that seem to have the undocumented, but affordable home care labor pool for NYC areas.
    But, since when is $140/day or so, considered affordable?

    who says the Cold War is over?

  6. #6
    I missed the rally because of cellulitis. This SCI is a treat.

    Tim, there's got to be a way to get somebody at that price. That's good money for somebody, since all expenses are paid. Even in NY, that's good money. Good luck.

    I have to ask-How are you as an employer? Would YOU work for you? Not trying to shift blame on to you, just really wondering.

  7. #7
    Senior Member SlomoScott's Avatar
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    Hi Tim,

    sucks you missed the Rally (you too Bethany), it was a nice night.
    What exactly does "live-in" entail?
    Do they actually live in your house 24/7?
    if so, when are they supposed to work? are there set hours?
    strange that you have so many russians, I'm near Philly and they haven't made it down here yet. Untrained help is a hugh problem. In NJ aides only make $8.50 or so an hour. It's hard to get anyone decent for that wage, and they are quick to jump ship when anything else comes along. Also, the fact that this type of work is part-time doesn't help the situation. Who wants to drive 30 mins each way to/from work when your only there 3 hours? $3 a gallon for gas makes itw even harder. Home health aids are needed in society, but they are not treated well. There is a Bill in congress that will hopefully address the issue, HR1264

    Background

    Today, millions of people with disabilities count on direct support workers to assist them in managing their daily lives so they can live, work and volunteer in their communities. These workers assist people with disabilities with daily medications, dressing, preparing and eating meals, getting to work, gaining life skills and handling daily affairs.

    Unfortunately, these positions have as high as a 75 percent turnover rate each year because of poor wages and high job demands, putting the quality of life for people with disabilities at risk. And demand for these workers is growing - hundreds of thousands of people with disabilities are waiting for services and the demand will grow 62 percent by 2010 as these Americans get older.

    To address these problems, Representatives Lee Terry (R-NE) and Lois Capps (D-CA) introduced the Direct Support Professionals Fairness and Security Act (H.R. 1264).

    You can go to the ARC website to send a message wto your legislators.
    http://capwiz.com/thearc/issues/aler...803636&type=TA

    best of luck in the future

  8. #8
    Senior Member Tim C.'s Avatar
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    Betheny, wondering about my employer-ing bedside manner, eh?

    It's a good day to lack sensory in my groin, with that surprise kick from you, lol.
    I sure wouldn't want to work for me.
    Daily, difficult, dig-stimming, at times bloody bowel programs into a friggin bucket under my shower chair, and ass clean ups are enough for me.
    The simple fact in NY is that it's just a no brainer to pass up a quad job for a 'driving miss daisy' job when they pay the same.

    ps; unless i stop shitting altogether, can I?

  9. #9
    Tim, OH I HAVE TO SAY THIS>>>

    God forgive me in advance...LOL...

    No, you can't quit shi....

    NOT when you are full of it...

    j/k...hang in there, Tim...

  10. #10
    LMFAO, teena. That's horrible time to joke.
    Daniel

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