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Thread: Is there anyplace to live long term that is just mainly for spinal cord injured

  1. #1

    Is there anyplace to live long term that is just mainly for spinal cord injured

    I been living in a nursing home with elderly for almost 15 years, They can't care for me the way I need, for example they will not help me cough, they said they don't do respiratory and if i need respitory I need to find a different nursing home. only nursing home near me with that will do respitory is a county run place that is a dump. I hardly ever get stretched and bowl care is terrible. every shift pushes me to the next shift. Is there anywhere in this country that has a nice facility with good care geared towards younger spinal cord injured population. They have me on the wing with the residents that are with the least amount of time left. you can't have a conversation with any of them. I can't take much more and with no help coughing which has been getting worse its only a matter of time before i get pneumonia and or end up in the county nursing home. There has to be someplace for long term care for quads.

  2. #2
    What state do you live in?

  3. #3

  4. #4
    Suggest you Google "Centers for Independent Living" in New York and find and contact one near you. Set up a meeting to discuss your needs to see if they can be of assistance if you wish to be relocated. Many quads live in homes and apartments on their own, with various supports in place, such as attendant care, etc. I don't know your situation, your age, your level of paralysis, your insurance, family involvement.....all of these would be important.

    If you plan to stay where you are, you would need to meet with the Director of the place and list the care you need. Suggest you put this in letter form keeping a copy, and giving it to the Director. There are laws regarding the care of nursing home residents, and it will be important for you to become aware of these laws and be able to negotiate your needs. Absolutely do not accept sub-standard care as a quadriplegic person!

  5. #5
    Contact Wheels of Progress, they are in NY- http://wheelsofprogress.org/

    Our mission: to create affordable, accessible,
    supportive housing and transformative
    environments for people with physical disabilities.

  6. #6
    Senior Member Vintage's Avatar
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    Hi Bert. I'm glad Jim found a resource for you to contact. I'm chiming in because I "feel your pain". I'm a para, not a quad. But I was in nursing homes and hospitals for a year and a half, and it was exactly as you've described-- each shift delaying my care...pushing it off on the next shift,...having to beg and wait for the bowel help I needed,...hearing people drawing their last breaths,..and having no one to talk to. I wrote complaints on specific aides and nurses who weren't doing their jobs. I wrote these complaints on paper, but with no carbon copy paper and no access to a copy machine, I had to make a handwritten copy of each complaint to save for myself. And, in the end, nothing changed. All the while, my long-time home was waiting for me, but I wasn't allowed to go home because my home wasn't "wheelchair accessible". The Assistant Director of Nursing took mercy on me and got the nursing home to donate its most dilapidated bed for my use at my house. Otherwise, I might have still been trapped in that nursing home,...or another one just as bad. From my experience, notifying a State ombudsman will get the attention of the nursing home administrator. The result will be that he wants you to leave. But, as you said, if the only other place is a dump, that isn't an improvement. I wish I could rescue you, but I could barely rescue myself. I've been home in my house for a year and a half. It's wonderful, despite hardships and poverty. Fight to get out of that place. Follow up on any lead with phone calls. Contact the ombudsman, as that may be the only person who is not directly under the thumb of the nursing home. And contact the link Jim gave you. Please let us know your progress.
    Female, T9 incomplete

  7. #7
    Senior Member dnvrdave's Avatar
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    Where in NY? I lived at Lawrence Center in Schenectady in 1986, and it was pretty great (but it was new then). I'm a quad and got all the help I needed from their CNAs. I saw no direct web site, but you could call them 518-393-2412.
    "The primary cause of unhappiness is never the situation but thought about it. Be aware of the thoughts you are thinking. Separate them from the situation, which is always neutral. It is as it is."
    --Eckhart Tolle




  8. #8
    Try googling group homes in the ZIP Code you want to live in. As a C5/6, try to work with voc rehab in helping you get a job so you can get your own place. I live in a small assisted-living facility that softly had injuries but still has some spunk. I get out as much as I can here in Phoenix going to conventions, sporting events or just hooking up with friends using public transportation. The only nice thing about living where I do is they are on top of meds and I always have a caregiver. In my own house there were several days when I was still in bed at 1 PM because the caregiver didn't show up of course this was when I was hiring my own caregivers. The next place I go I'll go strictly through a caregiving company in a part of the city where there are much more caregivers available
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

  9. #9
    Senior Member Vintage's Avatar
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    Quote Originally Posted by bert View Post
    .... I can't take much more and with no help coughing which has been getting worse its only a matter of time before i get pneumonia and or end up in the county nursing home. There has to be someplace for long term care for quads.
    Bert, how are you? We are worried about you.
    Female, T9 incomplete

  10. #10
    Senior Member Tim C.'s Avatar
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    Bert, I'm seeing this for first time. Please contact me

    Quote Originally Posted by Vintage View Post
    Bert, how are you? We are worried about you.
    Bert,
    I just randomly found this thread. You need to get the eff out of the nursing home.
    I got placed in one last Feb for 3 mos following a hospital stay for a bedsore.
    My doctor from Kess just about wrote me off for gone, I'm lucky I got out with my life!!!
    If not for my son coming with hi protein meals every morning, I'd be dead right now instead of him.
    At 56 I was the youngest by 25 - 30 years, they couldn't treat the patients properly , but most patients were suffering dementia themselves so they hardly noticed.
    You can't go to those places to live, only to .....

    >>>>I'm in NY too, you are MORE than welcome to bunk at my home. <<<<
    We can arrange something I'm sure.
    Please contact me , we are all in this shit together,
    Regards
    Tim

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