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Assisted living communities. Does Utopia exist?

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    Originally posted by mthomson View Post
    I'm 56 and a C6/7 Quad. I've grown weary of Indiana winters and would like to relocate somewhere warm. I currently live alone in my own home and pay aides to help with up/shower in the morning and down at night. I've got some $ and my SSD income on top of that. I'm envisioning a condo type community with aides and a la cart services available.

    I get along independently during the day and enjoy the freedoms of that.

    I'm most definitely not talking about a nursing home type scenario.

    Does anything like this exist?

    thanks in advance, mark
    I've been wondering if such a place exists for a long time. We are in such an extreme minority that there doesn't seem to be places that are specifically for groups of people like us. Instead they stick us in other places like nursing homes or something.

    I've been pretty lucky in that I've been living in my own place for the most part for 35 years. I've moved a few times, and even recently shared a home with one of my CNA's and her girlfriend for three years, and now I'm back living in my own place again because they wanted to move out of state. Over the years I also got a lot of help from my family, primarily my dad but he's now 86 and can't do much for me anymore. I'm 50 myself and I don't know how much longer I can live like this.

    Other than the first few years I was injured I have been privately hiring people the whole time and have been relatively lucky but since moving out of the house I was sharing with one of my CNAs my insurance company decided they wanted me to use an agency. Big surprise it hasn't gone very well. They had to fire the first agency after a few weeks because they were unable to consistently cover the hours. This second one has done somewhat better but they are running into the same problem at times. And with both of these agencies there's been a big language barrier issue. It seems like the large majority of agency workers here in Florida are Hispanic and don't speak English very well. It makes it very difficult to communicate with them, even if you utilize your phone as a translator. My caseworker keeps telling me to be patient and things will get better but I'm not very confident about that. But I'm giving it a chance for now.

    At some point though, whether it's because of the subpar performance of these agencies, or because I simply just can't live alone anymore, I would be thrilled if there were place I could go to, where there were other people with spinal cord injuries or something similar, living together in some kind of facility with a trained staff. There could be activities and outings on occasion. I really think I, and certainly a few others I've met over the years, would really benefit from such a place. Giving up a bit of privacy and a few other things would be a very small price to pay for such a group orientated living experience with other people who share much in common with you.

    I think places like this would make a huge difference for some people. If they existed.
    C4-C5 Quad since 9/15/85


      Couldn’t agree more!
      Last edited by Sheri; 14 Mar 2021, 7:29 PM.


        Here is one of the larger CCRC directories.

        And here you can search for those accredited by CARF. You can search on SCI programs more generally, also, so if you're unfamiliar with an area, they may have referrals for community facilities and housing options.




          • SCI-Nurse
            SCI-Nurse commented
            Editing a comment
            That looks great. I wonder what their waiting list is? In California it is VERY difficult to set up group self-managed living situations due to state laws. A few have been done by getting a waiver from the state, but even that is not easy to do. (KLD)

          I don't know now the exact waiting list time, but it not used to be that long. My opinion is, the best setup for a quad ever.


            Im currently in Memphis TN. I have explored assisted living private and community facilities. So far, there is a retirement community that would offer the type of care I need, but it's over $5,000, and i cant afford it. It's called Belmont off of Kirby St.

            There is another one, called King's Daughters and Sons, which is a rejab and long term care community, however, it has a waitlist.

            I have been thinking about SCI folks coming together and creating a wonderful literally IDEAL living space for us. Even if it's a group of 10 of us at a time, building a nice group of spacious enough homes... with a home any nurse or CNA would die to live in, and this nurse, or maybe two nurses would have a job for the rest of their lives...could build a family...and live normal while we would too.. We NEED this... we need a community thats clean, with roll in showers from the go...good quality build... im so depressed about the conditions we must suffer through...

            I also saw such a community in Canada... i dont recall the name now.

            Somewhere without crazy snow, with excellent public trans, good SCI familiar hospitalization and up to date materials...

            Would anyone here be interested in working on this?

            Thank you,


              We had neighbors in our condominium who were in their early 80s and about a year ago they moved inland about 2 blocks and about 4 blocks away to a Continuing Care Community. It has a great reputation except you must walk in when you move in. Once you move in they have a small nursing home only for residents. Most have regular apartments but with roll in showers and flush entrances to all buildings because they also have side by side single story duplexes (you live in southern Wisconsin it should have a basement due to rare but damaging tornados). and most of the Midwest got hit terribly by losses of CNAs to Illinois whose minimum wage went flying to $15 an hour and most surrounding Illinois have minimums closer to $7.25 an hour. And it is true! From friends who retired to The Villages the place is a bunch of swingers.
              Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

              Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.


                This proposed development in SC is a model that could be duplicated elsewhere, Osprey Village,
                While it has a primary focus of individuals with IDD, it could be a game changer for those that need in-home supports.


                  You may want to look at medical foster homes in your community also - they may cost similar to ALF.

                  Some assisted living facilities allow you to spend down your savings and then apply to Medicaid for those benefits.

                  It's a tough thing good luck


                  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.