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Thread: Working, The Stigma of Not Working & Disability

  1. #21
    kyle and betheny, I think you may be getting confused on what your family and friends intent are. I think they just want you to fine a interest in something. I don't think their looking at the financial aspect of it.

  2. #22
    I would love to go back to work myself but have the big problem. I'm on state insurance to pay for my caregivers and co-pays but the limit for income is $2000 and I get $1600 from my Social Security disability which gives me only $400 to make before I lose my caregivers and state funding. I'm trying to get back in school and need to go back to voc rehab but it seems like every time I get ready and I'm all gung ho about going to school I end up with a sore. It drives me nuts. I did all the testing and stuff through voc rehab so they're pushing me to be a mechanical engineer between my experience as a mechanic, my ability with math and I have really good 3-D perception in my head plus it's something I'm actually interested in doing. So I have to land a good job after school so I can get insurance and pay caregivers to help me out. It's going to be one hell of a ride between community colleges and a university being on opposite sides of town. Hopefully it works out once I'm healthy
    C-5/6, 7-9-2000
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  3. #23
    Senior Member ~Lin's Avatar
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    I hate that about gov aid, but of course don't have the answer. I don't think people should be punished for trying to work. There's a huge gap between the amount of money you can make while receiving aid, and making enough money/job with good enough benefits to be OK without the aid. So many if us get trapped. And then there's the issue of setbacks taking you out of work, like you pressure sores. I always seem to have a big setback as soon as I'm ready to start school again. It drives me nuts!

    I called voc rehab, I guess the medical emergency with my counselor was pretty serious because they said I'm being set up with someone new. That I should be receiving a letter soon with who and the appt date but she will leave a note to try and get someone to call me as soon as its set. I'm pissed that its dragging things along so long but also somewhat glad about a new counselor. The one I had was saying he didn't think I'd be able to get a new wheelchair cushion approved due to the cost, and that's one of the cheapest things I need! What I really need is a wheelchair lift so I'm able to leave the house more independently and on a regular basis. I've heard from people who got those covered or even new wheelchairs so it seems a lot depends on the individual counselor and what they are willing to fight for.
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    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  4. #24
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    Quote Originally Posted by rybread View Post
    I would love to go back to work myself but have the big problem. I'm on state insurance to pay for my caregivers and co-pays but the limit for income is $2000 and I get $1600 from my Social Security disability which gives me only $400 to make before I lose my caregivers and state funding. I'm trying to get back in school and need to go back to voc rehab but it seems like every time I get ready and I'm all gung ho about going to school I end up with a sore. It drives me nuts. I did all the testing and stuff through voc rehab so they're pushing me to be a mechanical engineer between my experience as a mechanic, my ability with math and I have really good 3-D perception in my head plus it's something I'm actually interested in doing. So I have to land a good job after school so I can get insurance and pay caregivers to help me out. It's going to be one hell of a ride between community colleges and a university being on opposite sides of town. Hopefully it works out once I'm healthy

    The thing that drives me crazy about getting disabled is that the system seems to push you down instead of up. You get X level of benefits, but if you try to work and make just a little money (like enough to live a decent life), you lose all of the benefits and are worse off (often pushed to poverty after medical and caregiver costs). So, you don"t work.

    In your case, I think getting a mechanical engineering degree is a worthy goal. That's a profession that pays enough to ovcome many obstacles and live a better life. That's assuming you actually are able to work after you get done. Again, at your age it is probably worth the effort to see.

    Good luck!
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  5. #25
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by ~Lin View Post
    I don't think people should be punished for trying to work.
    Don't worry; you're 'punished' for working as well. I paid 'extra' before construction to make my condo wheelchair accessible and it was considered an 'up-grade.' I'd like to redo my bathroom as I only paid for what I could afford 7yrs ago but I don't qualify as I earn too much (so I'll pay extra again and anything labelled medical is quadrupled in price it seems). Sometime in the next 5-10yrs, I'm going to need a van with a lift whereupon I'll be 'punished' again because I work and earn too much for any kind of financial assistance (van no problem, the lift and all the handicrap doubles the price) ... not looking forward to THAT bill. Currently saving for that mess ... that was the only account I didn't break into during the past three years of on/off illness.

    I won't complain though ... we were all in institutions a handful of decades ago.

    Good luck to those wanting to get off of disability assistance ... I can't imagine even trying it twenty years later.
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  6. #26
    Quote Originally Posted by lynnifer View Post
    Don't worry; you're 'punished' for working as well. I paid 'extra' before construction to make my condo wheelchair accessible and it was considered an 'up-grade.' I'd like to redo my bathroom as I only paid for what I could afford 7yrs ago but I don't qualify as I earn too much (so I'll pay extra again and anything labelled medical is quadrupled in price it seems). Sometime in the next 5-10yrs, I'm going to need a van with a lift whereupon I'll be 'punished' again because I work and earn too much for any kind of financial assistance (van no problem, the lift and all the handicrap doubles the price) ... not looking forward to THAT bill. Currently saving for that mess ... that was the only account I didn't break into during the past three years of on/off illness.

    I won't complain though ... we were all in institutions a handful of decades ago.

    Good luck to those wanting to get off of disability assistance ... I can't imagine even trying it twenty years later.
    Here in USA state voc rehab can provide svcs to help people retain employment. I assisted a good number of working sci folks to get new vans and equipment to help them retain employment. Typically, if a person is working they would cover the bulk of van cost with vr sometimes covering the entire cost of equipment. It would vary according to the individual's resources and needs. In some cases we would cover the entire cost of a used lift equipped van. Don't know if similar svcs are available in Canada. The reality of being sci is that our work related costs can be enormous, vr should not close a case on an sci person assuming they will never see that person again. If your local vr has that mind set it's your duty to disabuse them of that notion.

    Kyle, if I were you I would see my 1st priorities as being solving your skin and bowel issues and becoming a driver. Then get out into the community and find sonme activities you enjoy. Your mindset should be that the opinion of everyone who has not lived the reality of your disability doesn't know bullshit regarding what you should or should not be doing. One of the very few upsides of sci is that it should free you entirely from the expectations of others.

  7. #27
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    I would see my 1st priorities as being solving your skin and bowel issues and becoming a driver. Then get out into the community and find sonme activities you enjoy. Your mindset should be that the opinion of everyone who has not lived the reality of your disability doesn't know bullshit regarding what you should or should not be doing. One of the very few upsides of sci is that it should free you entirely from the expectations of others.
    Wise words...I especially like your last sentence. Fortunately I haven't had a pressure wound in a little over 2 years. Avoiding another wound is my biggest priority as a wound gets in the way of everything to say the least...
    C4/5 incomplete, 17 years since injury

    "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

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  8. #28
    Senior Member novanoin's Avatar
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    Lin, Indiana VR takes forever. I've waited 3 or 4 months for an answer from my counselor.
    Mimi

  9. #29
    Senior Member ~Lin's Avatar
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    Well I haven't seen my counselor since my first appt in April so I've got you beat. First it was an issue where they didn't receive my faxed paperwork and I couldn't get anyone to reply to me about if it was received. Then it was a couple month wait to my appt that got canceled, and now I'm waiting to hear of my new appt date... I had planned to get back to school in January, at least part time at the community college. So much for that. And from what I've read and be told it could take another year for me to get disability payments. I haven't worked a real job (and it was part time) March 2010. I'm not paying rent where I currently live so I'm in constant fear of them kicking me out, because the plan wasn't for me to be living here as long as I have been. Its especially frustrating because a frequent setback has been not being able to receive proper healthcare! Sorry for my monologue, its just all so frustrating and I'm so hard on myself. I still use denial to cope with my limitations.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  10. #30
    Senior Member ~Lin's Avatar
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    OK I have to share this somewhere... hope its OK, I'm really not trying to take over the thread. Just need to vent.

    I got a letter from voc rehab today. I thought woohoo! Finally. I open it and it says "your name was recently referred to us because you might benefit from services... blah blah... please call if you'd like to schedule an appt"

    WHAT?!? I called hoping it was a mistake but no. The woman said this was a different office when I gave the name of my former counselor. I explained I've already met with someone, faxed the drs forms, and had a followup for Oct 31. When it was canceled I called and was told I'd be receiving a letter with the new date. She said all her system had was that I'd called and to send out an interest letter. Of course who I needed to speak to for scheduling was already gone and with the holiday wont be back until Monday. I think on Monday I'm taking KLD's advice to try and reach someone higher up!

    And a friend pointed out the ridiculous that I was basically told 'we received a phone call from you so we sent a letter to ask you to call us.'
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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