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Thread: What was bothering me.

  1. #21
    I'd sure find another agency...We have friends in their early 20's at OSU in a complex that is fully meeting their needs...and good case managers...I know one who gets his assistance through Voc Rehab (pca's) while in school...if you want a # give me an pm...judy

  2. #22
    Hi Gotwheels, I couldn't help but response and it's great to have so much love in this forum.

    I'm a caregiver for my boyfriend and we share this account. I am his "attendant" during the day and at night, I am doing it because we are are "family." He is a T12 and he gets 30 hours a week. I imagine you should get more hours.

    Like you, he lived an independent lifestyle at a young age and was on the route to success. Now, in all honesty, he does most things himself - shower, transfers, even dressing - as difficult and time consuming as it might be. I cook, do laundry and clean the house.

    Your case manager is the one who "decides" how many hours you qualify for so you might want to do another interview if you feel you need more. Tell them what else you need help with. I gave them a list of activities. Maximize your hours. I also suggest you get another agency and start the process over to get a better schedule. There are tons of agencies out there that want the business.

    Programs are messed up everywhere. Learn your rights, fight as much as you can but make the most of it.

    I know it's hard and my bf feels terrible that he is dependent on me for small things in life. He's only 29.
    Hang in there!! Everything is heartbreaking, but life is worth it. Continue to believe.
    Last edited by gunami; 10-29-2008 at 08:49 PM.

  3. #23
    Hey what about this..far fetched maybe...if you can get accessible housing on a campus, see if you can work out a deal for them to pay for an aide for you that is also a student that will be a roommate too. I think it has been done. Not sure how it might work.....

    Mary
    1FineSpineRN

  4. #24
    Senior Member DaleB's Avatar
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    [OFFTOPIC]

    i'm a T12 and my wife won't even cook and clean for me all the time, and i bought her a house! and a car, come to think of it. seriously...a T12 gets 30 hours of attendant care per week?!?!?!?! really?!?!?!?! wow. You are obviously a greatly caring person, my hat's off to you. i hope you never get taken advantage of. the world needs more kindness like yours. you dealt with the case manager on his behalf? again, wow. he's not yet a year post. he'll be up and doing the laundry, soon enough! if there's nothing else wrong with him other than a T12 SCI he'll be fully independent in due time. if not within the next year, if i were you, i'd wonder why so many folks with higher injuries manage to live life to the fullest, flying solo. good luck to the both of you! SCI ain't an easy road...but at least it's a road and you're traveling it together.

    [/OFFTOPIC]



    Quote Originally Posted by gunami View Post
    Hi Gotwheels, I couldn't help but response and it's great to have so much love in this forum.

    I'm a caregiver for my boyfriend and we share this account. I am his "attendant" during the day and at night, I am doing it because we are are "family." He is a T12 and he gets 30 hours a week. I imagine you should get more hours.

    In all honesty, he does most things himself - shower, transfers, even dressing - as difficult and time consuming as it might be. I cook, do laundry and clean the house.

    Your case manager is the one who "decides" how many hours you qualify for so you might want to do another interview if you feel you need more. Tell them what else you need help with. I gave them a list of activities. Maximize your hours. I also suggest you get another agency and start the process over to get a better schedule.

    I know it's hard and my bf feels terrible that he is dependent on me for small things in life. He's only 29.
    Hang in there!! Everything is heartbreaking, but life is worth it. Continue to believe.
    __________________

    He who hears not me but the Logos will say: All is one.

  5. #25
    Senior Member Hunker's Avatar
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    Quote Originally Posted by GoTWHeeLs View Post
    The agency system here if messed up. So are the programs. I just got done with a report and the OKC Thunder game is starting, i'll post more in depth tomorrow.
    Really fu'd? not... I pay with my money and so far I have been broke and worrried for 25 years. I payed $127.00 for my yearly. He told me I would live 1 year because my next appt. is in 1 year. I told him about Cipro. Is it good or bad?

  6. #26
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    Quote Originally Posted by gunami View Post
    Hi Gotwheels, I couldn't help but response and it's great to have so much love in this forum.

    I'm a caregiver for my boyfriend and we share this account. I am his "attendant" during the day and at night, I am doing it because we are are "family." He is a T12 and he gets 30 hours a week. I imagine you should get more hours.

    Like you, he lived an independent lifestyle at a young age and was on the route to success. Now, in all honesty, he does most things himself - shower, transfers, even dressing - as difficult and time consuming as it might be. I cook, do laundry and clean the house.

    Your case manager is the one who "decides" how many hours you qualify for so you might want to do another interview if you feel you need more. Tell them what else you need help with. I gave them a list of activities. Maximize your hours. I also suggest you get another agency and start the process over to get a better schedule. There are tons of agencies out there that want the business.

    Programs are messed up everywhere. Learn your rights, fight as much as you can but make the most of it.

    I know it's hard and my bf feels terrible that he is dependent on me for small things in life. He's only 29.
    Hang in there!! Everything is heartbreaking, but life is worth it. Continue to believe.
    T12 is an extremely low level injury. I am not sure how you get paid 30 hours a week to be an attendant for someone who should be completely independent and doing his own darn laundry.

    You basically get paid to be his maid? These attendant hours should be for personal care which he obviously doesn't need according to what you wrote above.

    IMO I think you and your boyfriend are ripping off the system when people like Gotwheels need an attendant and can't get them.

    Before you jump on me, I am T12-L3 and am completely independent (and have been for 20 years), raised a child as a single parent, and work 40-50 hours a week.

    Sorry just my opinion.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  7. #27
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    Gotwheels, we all have bad days. I was pretty much having my own pity party the other day when you posted that.

    We all need a good whine every now and then.

    I wish I could do something for you other than offer encouragement.

    Just be tough and hand in there........
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  8. #28
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    Quote Originally Posted by gunami View Post

    I know it's hard and my bf feels terrible that he is dependent on me for small things in life. He's only 29.
    He is less than a year post. (I am actually surprised at the attendant time he gets,)

    I am t7-8 and can do anything that I can reach around the house. I have a hubby and kids at home, so get some help, but can do most anything. So don;t let him get discouraged about needing a little help. But also, please don;t let the fact that he supposedly needs these hours keep him from figuring out how to do the things you do. Cooking just needs a reorganized kitchen. After 2 years we lowered the counters, and put in different cabinets, but until then, it was a case of putting what I used where I could reach it. Laundry is doable, as long as it isn;t in the basement, mostly life is just a case of moving things where you can reach it. As a low para, he will figure it out!

    OK sorry GotWHeels for the hijack,

    good luck gettting your attendent situation figured out. Sounds like naybe you need to put your foot down?
    T7-8 since Feb 2005

  9. #29
    Quote Originally Posted by madmaddmother View Post
    I'd sure find another agency...We have friends in their early 20's at OSU in a complex that is fully meeting their needs...and good case managers...I know one who gets his assistance through Voc Rehab (pca's) while in school...if you want a # give me an pm...judy

    C/GotWheels, this sounds like it could be a real solution. I don't know if OSU is where you'd like to go next fall, but you'll need to transfer to a different school for your degree.

    VR should help with assistants for a.m. and p.m. care for quads who need it to attend uni. I'm glad to know VR does that in some states and commonwealths

    Way to roll with the info Judy. Oh, and welcome aboard.

  10. #30
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    GotWheels,
    Like many here I just wanted to respond to you to tell you I hear your frustration and I am sorry that the system is as insane as it is. You have drive and determination, and one would hope that they would take great notice of that and fund you for more time instead of the usual bs. I do know someone who went to a university here and lived in an accessible dorm using students as pca's. It helped that the university he went to had both a school of occupational and physical therapy, which provided him a supply of eager helpers. Hang in there. I know how much it sucks, as I had to stay at home about eight years longer than I would have without the SCI, but you will make it eventually. Thanks for sharing.

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