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

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    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
    What state do you live in?

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      #3
      ny

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        #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!

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          #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.

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            #6
            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

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              #7
              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.
              "Cherish your tears. If you can cry, you still have some humanity left, and you are reclaiming more of it." -- David Kelly


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                #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.

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                  #9
                  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

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                    #10
                    Bert, I'm seeing this for first time. Please contact me

                    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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                      #11
                      I'm ok, just a sucky situation. for now my coughing i've been able to keep it at bay on my own, just scary when i get congested and can't cough, if i go to the er they won't help me cough either. they try a couple times but they have no clue what they're doing.my family is 20 minutes away so i don't want to move farther away from them. my folks might move in a year to north carolina area and will try to find someplace near them to live. I lived home for several years after injury but couldn't get enough help to stay home. been in this place 14 years. I'm 39. idk what to do, i'm stuck, we looked into everything in a 50 mile radius and this is the nicest facility by far so if i'm having trouble sometimes here i can't imagine being in those other places. Tim thanks for the offer, i appreciate it. you think somewhere there would be a quad only long term care facility.

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                        #12
                        There is NO good place for a quad long term care. Not especially a nursing facility in NY or anywhere close unless you're have a king's ransom to spend, and a connection to get in.
                        A quad-only place would cool, but it's just a dream.
                        I see many group-homes dispersed among residential areas but you need to be ambulatory and/or mentally challenged.
                        We get screwed.
                        When I was placed into what is supposed to one of the best nursing homes (rehab) on Long Island, and I squeaked by, I mean the manager straight-up told me that if i didn't mind settling for powdered-egg breakfast 3 hours after they deliver it that I need to hire someone!
                        Let alone get washed, bowel care, dressed, chair transfer, etc.
                        What part of NY are you in?
                        Are you on Medicaid I assume, or private?
                        Are you planning to move to your parents when they go to NC?
                        if yes, then you need to worry about modifying home for your chair, or start looking now for a nursing home that can torture you.
                        The nursing policy is to push the oxy's on patients in effort to get them doped up and unaware.
                        If you wish to consider bunking with me, you're welcome to come give a look-see. We can share caregivers and never have to worry about a thing.
                        Tim

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                          #13
                          There are very few group homes set up for those with SCI. An exception was in New Start Homes in the San Fernando Valley in California, which was located in regular neighborhood homes, initially designed as a place for vent-dependent quads to live as a transitional setting between rehab and getting their own place. There was shared attendant care, and nurse case management available. Originally started in the early 1980s by Mary Williams, who was an RN at Rancho for many years, New Start Homes were bought out by CareMeridian in 2010. She then started a foundation called Freedom to Live which helps people get out of nursing homes and transition to independent living: http://www.freedomtolive.org/

                          (KLD)
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                            #14
                            In Colorado - affordable housing + home healthcare, v experienced with SCI population - http://www.gciinc.org/

                            In Oregon - affordable housing + home healthcare, multiple locations, name stands for quadraplegics united against dependency - http://www.quadinc.org/

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                              #15
                              Very cool of you to offer that Tim.

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