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    Finding continued help...

    once your loved one is no longer in-patient. For a year and a half I have searched and researched rehabilitation centers throughout Mn. and Florida for my son. It is hell. There has been one that was wonderful overall and I wish I would have been able to talk him into staying and seeing it through but he was so home sick... I will warn you ahead of time upon reading this that my head is full of thoughts, my heart is heavy with disappointment time and time again but my spirit continues to fight to find SOMEWHERE that will give to my son what I haven't been able to bring about for or out of him due to many different aspects/circumstances surrounding his sci and his recovery since and our lives otherwise. It is always like this:
    we can't take your son as in-patient because he is not in need of ot/pt. Hmmm. Okay, yeah, he has come a long way already but he is still in need, in many different ways even if he is quite independent, even if he hasn't had severe medical problems. And what about his return to the full world of independence via college, you know, social interaction other than within the realms of this small town and the difference of city life that goes with college? And what about his need to learn a more in depth awareness of self-care without his mother around to remind him (and anger him with the "mamatyzing" of it but...) when he isn't paying close enough attention while he gets out and about with his friends and lives life to it's fullest otherwise? And what about the fact that he is still getting return, there has been more and more notible movement/control, even in the slightest of ways, it is there and yet because it is post one and a half year it obviously isn't important enough to insurance or what have you, to get him pt that offers him things he can't get within a reasonable radius of home? I am so angry, so hurt and feel so much probably the same that he does in the disappointment of it being like he is doing so well but return has come too slow and too late for anyone to care or do something more for him, so why bother. I realize many go through this, I realize many have been through too damn much alone even more than we have, I realize as he does there are things he will just have to try and learn on his own, without me or anyone else but still...I can see why some who have not had anyone to help them personally through this, finding their way, have been to hell and back in many, many ways that shouldn't have been for them and how unfair it must have been... [img]/forum/images/smilies/mad.gif[/img] Well, enough said for now as I gather my thoughts again but I just had to vent and let some of the frustrations out, wondering if some of you have felt the same way?

    [This message was edited by teesieme on 01-22-04 at 12:15 AM.]
    "I want to make a difference! However small it may be~ as long as it's a positive one, then this is what my life will have been about and I will go knowing I did my best.~ T.

    Oh yeah, and one more thing I wanted to offer from this experience is to advise those new to sci...get your loved one somewhere that has EVERYTHING, right away~ from OT to PT, meaning the newest equipment to the fullest sense of new rehabilitative ways/attitude overall while you can, if you can, don't wait! And thereafter, although home is wonderful in it's own way of healing and happiness, if you don't have someone who comes in, out of the house (aide or what have you) helping you and your loved one learn, it is really tough no matter how much time you spend researching/learning, they are the ones who have the connections and experience otherwise. Lots of help out there, but very hard to find or qualify realistically.

    [This message was edited by teesieme on 01-22-04 at 12:17 AM.]
    "I want to make a difference! However small it may be~ as long as it's a positive one, then this is what my life will have been about and I will go knowing I did my best.~ T.


      u are your sons biggest help and hope. noone luvs him like you, and noone will ever give him the support that you, see as adequete.
      i was 15 when i was injured, inc c4-5, only child, 15 years ago. rehab was a joke, put me in a shitty chair ect. my mother and father helped me figure everything out, for the first 3 years home they picked me up off the floor , i cant even count the times. they are and always have been my biggest supporters.
      if it werent for them, i would be like alot of quads w/ my injury, dependant on opthers, because pt/ot's were worthless, but because of their help and diligence im independant qand a productive member of society.
      i got alittle off base, just be his rock and he will be fine rep
      c4/5 inc funtioning c6. 28 yrs post.
      sponsored handcycle racer


        From what you describe, your son is more in need of a social rehabilitation program than a medical rehabilitation program. Unfortunately due to recent changes in federal regulations, acute rehabilitation centers have been placed on much tighter restrictions on what they can provide, and who is eligible for their services, either as an inpatient or outpatient. This applies to all their patients, not just their Medicare patients, even though the regulations are from Medicare.

        Few insurances will pay for any PT or OT unless there is significant chance of improvement in function as measured by the FIM tool. "Maintenance" therapy is rarely covered.

        While he certainly needs to exercise, this does not have to be done exclusively within a rehabilitation center.

        Does your local college or university have an adaptive PE program? Are their local wheelchair sports organizations he could link up with? Even the Y sometimes has these types of classes. Sometimes this is a good resource. Ask the PT or OT or recreation therapist at a good rehab center for a community exercise program referral. They should know.

        Is your son working with a support group such as a NSCIA chapter or a local Independent Living Center? Many ILCs offer life-skills training courses, courses on benefits, pre-vocational training, etc. They can also help him get hooked up with DVR if he is not already.

        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.


          fuentejps, ty and you are right, as a mother I have been the rock but the stone wants to roll on down the hill it just gets a little bit stuck in the mud around here. LOL. [img]/forum/images/smilies/wink.gif[/img]
          And this last place we toured offers "social integregation" (right word?) as part of their rehabilitation, so I just don't get it! [img]/forum/images/smilies/mad.gif[/img]
          He could go as out-patient but we live three hours away, I had hoped and am still going to push for it, somehow, some way.
          And yeah, I know the improvement has to be significant enough through is a shame though when the possibilities continue to show little by little. [img]/forum/images/smilies/frown.gif[/img] I hope to some day take a part in changing that for others.
          There is help, a half hour to an hour away for VR and Job Placement, etc. but I know things would come about quicker and with more opportunities if he were involved in a rehab. atmosphere vs. home. I have learned that this past year and a half. There is only so much mom's can do...but I will keep on trying! [img]/forum/images/smilies/biggrin.gif[/img]
          "I want to make a difference! However small it may be~ as long as it's a positive one, then this is what my life will have been about and I will go knowing I did my best.~ T.


            My brother is Medicare with secondary private insurance. Medicare has been paying for continued physical therapy. His doc wrote a script. But it isn't at a rehab center, a private therapy center that has a pool. He has recieved ultrasound and heat treatment on a shoulder that was also mauled in the accident. That has extended to pool therapy which has been helpful. He also gets on the matt and uses the weight machines with assist. I was very leery of a smaller center like this but am impressed so far- almost 8 months, twice a week. The bigger rehab center felt that he wouldn't benefit any more, but he has been able to get stronger and more range in shoulders. It seems the key for us was the physicians script for a specific problem (shoulder) due to the sci.


              lilsister, happy for you and your brother that you found a good place to go. Sounds like out-patient pt though? And yes, there are many private places that offer good therapy, our problem is there isn't any near where we live that offer more than just the basics. Sigh. And we can't afford to keep both our house and pay out of pocket otherwise. Guess that is just another reason to move somewhere warm!
              "I want to make a difference! However small it may be~ as long as it's a positive one, then this is what my life will have been about and I will go knowing I did my best.~ T.


                Teesieme, Does your son have a physiatrist? We've never been denied PT or OT for my son, although a lot of it has been outpatient. I would ask the physiatrist to provide a letter of medical necessity for more inpatient rehab, if you haven't already done so.

                However, it just may be that with all the insurance clamp downs, unless there is an acute situation, the insurance companies won't reimburse for a 'conditioning' inpatient stay. Frustrating as hell, I know.

                PS - I laughed at your 'mamatyzing' word! We hear that at our house, too!

                Tough times don't last - tough people do.


                  Hi Marmalady. Yet another word I thought I had made up, lol. [img]/forum/images/smilies/cool.gif[/img] You know that was yet another question I had a year ago into this, the difference I read about, between a physiatrist and otherwise, but the reply I received was that we already have an sci physician, if we are just wanting to switch doctors that's all that would come of it. Hmmm, again. Well, good news just came, hopefully it follows through but being that my son has been having some knee issues causing "regression" otherwise these last few weeks, and the fact that he had never been on his own prior to his injury and in need of some guidance towards college and complete independence away from the homefront, he may just qualify for a short in-patient period after all!!! Yeah!!! Oh how I pray that it is so~
                  "I want to make a difference! However small it may be~ as long as it's a positive one, then this is what my life will have been about and I will go knowing I did my best.~ T.



                    Another idea you may want to consider concerning in-patient rehabilitation is annual re-evaluations / check-ups.

                    For example, many (90%) of Craig Hospital patients come back annually, usually for a week, for re-evaluation - physical, physiological and potentially psychological.

                    It is during this time, especially the first couple of years, that many patients now being healthier, stronger and more coherent than they were during their initial stay are much more receptive, ready and eager to learn. This annual evaluation is, as far as I know, covered by most if not all insurances.

                    So, if your son were to go back under the guise of a re-evaluation he may be then able to continue his in-patient rehab / skill set. Am I making sense?

                    Additionally, although a physiatrist is important and so are OT/PT when it comes to learning new and varied skills I think that most patients learn from other patients.

                    Therefore, maybe by attending one of the 16 SCI model centers around the country your son could potentially get a check-up, learn new skills and have it covered under insurance all while being "in-patient".

                    Thoughts? Comments?

                    Good luck.


                      Hi Chris, saw your note to check here again~ [img]/forum/images/smilies/smile.gif[/img]Yes, thank you, that will be another reason or guise to help with the possibility of even a few weeks for experiences overall. I agree, that the experience learned through others is best and in the place I have selected and am hoping for offers exactly that, a large percentage of their employees were once their patients. My son is set on owning his own business that would involve working in, out and around cars that are customized. And here they knew exactly what I was speaking of when it came to adaptive equipment to do so if able to use them~ we believe he can. He is ready. TY. [img]/forum/images/smilies/biggrin.gif[/img]
                      "I want to make a difference! However small it may be~ as long as it's a positive one, then this is what my life will have been about and I will go knowing I did my best.~ T.