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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.
    "Whatever you think the world is withholding from you, you are withholding from the world." --Eckhart Tolle






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