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

  1. #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 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.

  2. #12
    Senior Member Tim C.'s Avatar
    Join Date
    Oct 2002
    Long Island, New York
    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.

  3. #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:


  4. #14
    In Colorado - affordable housing + home healthcare, v experienced with SCI population -

    In Oregon - affordable housing + home healthcare, multiple locations, name stands for quadraplegics united against dependency -

  5. #15
    Very cool of you to offer that Tim.

  6. #16
    Senior Member Vintage's Avatar
    Join Date
    Nov 2016
    Texas USA, female ************** T9 incomplete
    TimC, maybe the forum Admin would contact Bert for you? Maybe they would send him an email? My experience in nursing homes was like yours. I fought for my life to get out of them. And, yes, the residents start out somewhat social, but within months they are wandering around, later asking you where theirr room is,...then the hospice nurse starts visiting them. I hope Bert didn't wait too long to fight. Did your son die, Tim?
    Female, T9 incomplete

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