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    Home Health Care

    Can anyone give advise on the most reliable way or organization to provide home health care in Northern NJ? My brother is due to be released from Kessler within the next few weeks and we do not have any real leads on home help. Insurance is not going to cover anything and the hospitals and agencies my parents have contacted do not have people who will come out at night - when they feel they need the most help.

    To top it off, they do not have a shower on the first floor of their house! They are in the process of hiring a contractor to add an apartment for him, but it will be months before it is completed.

    FYI he is C5/C6 quad.

    Any ideas?!


    HI, Book-Sis,

    I would first address the home situation; I'm wondering why it's going to take 'months' to get this completed. When my son was at Kessler, our contractors took 6 weeks to complete an entirely new bathroom, a deck and 100ft long ramp, widen doorways and one hallway, and add new doors and windows. Tell your parents to lean on the contractor - hard - and stress the importance of this needing to be done. Also have them talk to your brother's physiatrist to see if they can extend his stay at Kessler while the work is being done. The Occupational therapists will have a huge say in this - they don't want to discharge if it's not safe for him to be at home.

    Now the home health question, and some questions first - insurance is not going to pay for any care at all for a C5-6 quad? Will your parents be paying out of pocket? What sort of night care does your brother need? Meds can be adjusted so they're not needed in the middle of the night; the frequency of being turned at night can be slowly stretched out so that turns aren't needed as frequently. Talk with the OT's about which 'low air loss' mattresses they recommend, and I would seriously demand that the insurance company pay for one of those, if they are not going to cover aide care.

    Re actually finding an aide, if you are going to have to pay out of pocket; I would recommend putting ads in the paper and doing the interviewing yourselves. You will get a much higher quality aide. I would also post an ad on the bulletin board at Kessler that's right outside the cafeteria; sometimes the Kessler aides are looking for extra hours, and you may be able to pick up an evening aide from Kessler.

    Here is a link from Craig Hospital in Denver on hiring aides; it's a wealth of information:

    I'm glad you've found us, and hope this has helped a little. Please don't hesitate to ask questions, and feel free to email me if you like, at


    PS - My son is a Kessler 'grad' also; we lived in Bridgewater, and have recently moved to South Carolina.

    Tough times don't last - tough people do.



      Thanks for the advise. The answer we keep getting from the insurance company, Aetna, is that there is NO help with home health care, bottom line. Simply amazing. Aetna also wanted him out of Kessler last week, after 2 1/2 months, claiming any further help he needs can be done on an outpatient basis.

      A little background on Dennis, my brother, he had a fall July 20th in VA while at a BBQ, broke C4, C6 and shattered C5. He was taken to a Level 1 trauma center just outside of DC where he had to wait for four days for his surgery due to the fact that he has Leiden Factor 5, a genetic blood clotting disorder. So they had to wait until the Cumaden was out of his system. He had his 10 hour surgery, cleaning out the shattered bone, fusing part of his hip bone to replace C5, and stabalizing his neck with rods, pins, etc. He had a halo screwed in for stabalization. There were not complications with the surgery but had quite a time for the next 2 weeks with oxygen levels, high fevers, ilius and blood pressure issues. He had a trach tube put in after 10 days to help with breathing. He was flown to Kessler mid-August, still on the vent. He had trouble with his temp for about two weeks after arriving at Kessler but thankfully that has not been an issue since August. His biggest issue has been UTIs, three times so far. He was weaned from the vent after two weeks and has been doing just fine with this breathing and oxygen levels since. His halo was removed just over three weeks ago and the trach came out just after that. His trach hole has not yet closed completely and that is really starting to get on his nerves, he is losing a lot of air through it on a regular basis.

      He's doing really well in therapy, better since the halo was removed. He has no hand function, but has gotten some good wrist control back. He has some sensory over most of his body and can feel when he is given his suppository and when he has a BM, this we are taking as good news.

      He really has a great attitude and his spirits are really good, he is 33, not married and no kids yet. We are a really close family but this has really tested us, so far we are doing ok. I just feel so sad for my parents. This is supposed to be their time to relax and enjoy life and each other.

      As far as insurance,etc....Aetna told his physiatrist 10 days ago that he had to leave in 3 days!! Such compassion! He had not been tested on any mattresses, comode chairs and had just gotten into a power chair a week before. It looks like he may be able to stay until Dec. 3rd - at best. I would think it would be up to the OTs and PTs on when they felt he was ready to go home, but that does not seem to be the case right now. I guess we feel he needs help at night because of the bowel program and showers. I know his schedule can be changed but right now that is how it is set up. We were thinking of asking the OTs and PTs if there is a PT school nearby that may have students that would want extra money. It is a good thought to post an ad in the paper and on the board at Kessler. We have been disappointed with Kessler many times in the last three months, there seems to be quite a bit of lack of communication within their system. But that rant can wait for another day.

      As far as construction goes, their plans include an elevator, because they are going to add an 'apartment' above their garage. There is not room to add anything on their first floor, although doorways will need to be widened on the first floor. Right now there is nowhere for him to have a shower at their house. It is so overwhelming for my parents, it seems every day something makes them more sad. Dennis is their baby, youngest of four, we always call him Gentle Dennis because he is such a gentle kind man.

      I am so glad I found this site, it has been so informative and helpful.

      Thank you!!

      I will check out the Craig website to get more ideas.



        Everyone's situation is different, so please accept my opinion for what it is.

        Given the extensive construction required at your parents' house, I would strongly urge your family to consider finding an apartment for Dennis. That would give your parents one less thing to worry about, although I know your parents want to be as close as possible to their son. I know what I'm suggesting sounds scary and nearly impossible, but it can be done.

        Regarding insurance ... I've had Aetna in the past and currently have BC/BS. Neither covers what is deemed "custodial care" -- showering, dressing etc. Custodial care is anything that does not require a trained medical professional and can be taught to an "average" person. It sucks, basically.

        I'm C5/6, 14 years post. Good luck to you and your family.


          Good that they were able to get your brother an extended stay til Dec. 16 - that's more than most! Make sure the therapy dept. has ordered wheelchair, shower, chair, bed, etc. - stay on them! And if you're going through Wilpage, their vendor, hound them mercilessly!! They are notoriously slow.

          Re the aide requirements - Seton Hall has OT and PT programs, and we've used two evening aides from the student population there. Using students is great in one way, because they're very eager to learn, and the in home experience is good for them. The down side is that you do have to train them, as they've not had any clinical experience; they do have tests and projects which could interfere with the schedule, and they do graduate and move on, so you have to start the process all over again!

          If you're wanting a 'night' aide for bowel program, shower and getting settled in for the night, then an aide just for evening hours would work. I don't think you'd really need a whole 'overnight'; you'd be paying for someone to snooze in a chair. Do post an ad at Kessler, and talk with your brother's aides; someone may want some evening work.

          Clipper, your suggestion was a good one in terms of not having to do an addition, but my own experience when my son came home was that he/we wanted to be close, and he needed pretty much 24/7 observation and someone in the house. There's no way I would have considered an apartment for him then, which would also have required 24/7 aides. Maybe later, down the road, tho, it's something to think about.

          Question - can they just convert the garage? Would alleviate the necessity for an elevator, even tho your parents would lose the space in the garage.

          Re Kessler, you're right - that's a whole other issue! [img]/forum/images/smilies/wink.gif[/img] - There are some great folks there, tho, and their hands are being tied by Kessler's new policies, and the restrictions insurances are placing on them. And you're right that it should (in an ideal world!) be up to the staff - PT/OT and physiatrist, who decide when a person is ready to go home; unfortunately, as you've learned, the insurance companies are dictating those decisions. If there truly is nothing ready for him to go home to in the way of living quarters, and his equipment will not be ready, I would appeal to the insurance again, and perhaps talk with a disability attorney to see if some negotiations can be made. Talk with the physiatrist and OT/PT folks re 'home safety' issues.

          Are you and/or your parents attending the spinal cord education classes at Kessler? Bowel/bladder/dysreflexia/social, all that is discussed during these sessions, for both family members and patients. Sandra DeLeon, I believe is the coordinator for that.

          Has Dr. Greene looked at the trach hole, to see why it's not closing? To my knowledge, and from Matt's experience, it was closed on its own after about a day or so.

          UTI's are unfortunately common in any hospital/rehab setting; the 'bugs' there are pretty opportunistic. Make sure he's drinking lots of fluids; and do a search here for ways the members use to try and combat UTI's.

          Hope this helped some! Again, email me if you like, I'd be happy to help in any way. Oh, and hug your parents and Dennis for all of us here! It's unfortunate that you had to join our family on CareCure, but you have certainly come to the right place!


          Tough times don't last - tough people do.


            I was giving an opinion based on my own experience -- each family must do what is best for their particular situation. I know how much my parents wanted me to be near them. To this day, they would welcome me into their home in a second.

            After I was released from rehab, I moved back to my home state and lived with my best friend. Prior to being released, my parents and my best friend rented a wonderful accessible apartment and hired two morning aides and one for bedtime. My best friend was there overnight, which was great. My mom stayed with us until I was settled and comfortable.

            I think that not living with my parents enabled me to "get on with my life" much sooner. But this is just speculation, and I know that I was very fortunate to have someone to live with.

            Again, good luck to you and your family.



              I do think it is a good suggestion and I wish Dennis was up for that at this point. His goal (or one of them) is to live on his own again, he has done that for 10 years.

              He is really uneasy about coming home in general and I think the thought that my parents, who he is more less comfortable with - as much as a 33 year old man can be - will be in the next room for now is a calming feeling for him.

              He is not sure how he will be able to do a lot of things for himself yet. He is still trying to get his strength back, he has lost about 30 pounds, lots of muscle.

              thanks again for the ideas!



                Thanks for the tip on Seton Hall, I will give them a call tomorrow. And I will check on who/how the equipment will be ordered, sounds like a full time job making sure these things are ordered in a timely manner.

                We need more hours in a day!

                thanks so much for the support!


                  I would second NOT using an agency if you need to private pay. They will charge roughly twice what you would private pay directly to the PCA, you will have less control and choice of who you get, and often the agency will require a minimum number of hours per visit (usually 4) which may be more than you need.

                  Here is an excellent resource to use when planning on hiring a PCA. I strongly recommend having a written job description and contract, which can be adapted easily from this resource:


                  There are also books you can purchase. I would recommend both of these:

                  Avoiding Attendants from Hell

                  Managing Personal Assistants: A Consumer Guide

                  This is also a good resource for training the person when you have selected and hired them:


                  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.


                    My issue with my Aetna HMO and not being able to get HomeHealthcare was not because I was/am "custodial" at all in nature. I am a c5/6. I could not get Home Health because I am not considered "Homebound" (I'm employed 40hrs a week), as Medicare Guidelines state you must be homebound and most all Private Insurance uses Medicare Guidelines.

                    Your brothers situation (at this point) is not "custodial" in nature as he most likely (according to insurance) needs "acute nursing", so in the least he could have a nurse at the c4/5 level paid for by Aetna. I would get a decsion in writing from Aetna why he has been "denied" home health. At that point, you need to file an appeal with Aetna. and then go from there.

                    This is my experience. Each policy is different. However, don't back dowqn with the insurance, and try to stay strong your brother and your family. Its not easy, but you can do it! Keep your head up! [img]/forum/images/smilies/wink.gif[/img]

                    "I guess pain is a great motivator."- Yanni


                      Liz, thanks for this post and sharing your experiences and thoughts. I do smell a rat with what aetna is telling these folks.

                      Tough times don't last - tough people do.


                        SCI Nurse,

                        Thank you so much for the advise on PCA. I have given the info to my parents and we will work on it this week. I will be checking out the web sites and books.