really frustrated with insurance!

    • Anonymous
      July 27, 2007 at 4:37 pm

      Just need to vent a little. Rehab doctor feels a week of inpatient rehab might be really helpful to get my daughter (12 years old) more independently mobile. Looked into this 2.5 months back, but at that time he felt her fatigue and overall weakness would make inpatient an impractical option. Now she is much better energy-wise, and starting to use crutches (but very hard). We have run out of coverage for outpatient PT and are paying out-of-pocket for 1x a week and doing PT ourselves at home as well. Anyway, Doc feels we are doing all we can but that the PT staff at the hospital might really help boost her progress a little, before school starts.

      But insurance says inpatient rehab is ‘medically unnecessary’ and can be ‘handled on an outpatient basis’. It is on the 2nd round of appeals. I don’t have a lot of hope for it now. She is feeling very let down, how to explain to her that her inability to walk still is not medically important to the insurance? Our policy says inpatient rehab is covered. However, they say anything “medically unnecessary” is not covered. How can their docs who have never examined her trump OUR doc, who thinks this is what she needs right now?

      It really makes me angry! Of course we will keep on, and she IS getting better, but she’ll be heading back to school in a wheelchair if she’s not able to independently get around. It is going to be hard to fit in the PT that we are doing (swimming, assisted walking, various exercises) But, it would just kill her morale to not be in school with her friends. But I worry w/out the continued PT she’ll plateau. She is so ready for life to be normal. We are about 6 months out…maybe she’ll have a breakthrough like Kevie? So far though, she has steadily improved albeit very very slowly. I really thought she’d be walking by now, has been on the verge for weeks, strength improving but the balance isn’t there at all.

    • Anonymous
      July 27, 2007 at 4:52 pm

      Has her dr put in writing why it is necessary for her to be inpatient vs outpatient? usually once the patient has gone through outpt pt there is no need for inpt pt, unless there was a relapse, which would mean she would have to be admitted first. if the ins doesn’t go in her favor, maybe her dr can get creative. Maybe on the other hand she needs alot longer outpt pt, in which case her dr can write a medical nec paper for that to get the ins to cover the extended time needed. Do you have a case worker at the ins co? There is a med need for your daughter to have independance at school, and the summer isn’t over yet, but the ins needs to have more proof from her dr that she isn’t recovered as much as needed for school. Does your ins cover home pt?

    • Anonymous
      July 27, 2007 at 5:43 pm

      Her doc put it in writing, they read it to me on the phone, sounded compelling to me! He also had a physician-to-physican phone conference. No luck thus far on getting outpatient extended either. The policy is clear, only 20 visits outpatient covered. But I am hoping they will reconsider now. (but that’s a separate appeal) Don’t know about case worker but husband’s company has their ins. agent all over it. (how do you get a case worker? We keep getting shuffled around from person to person and EVERYONE seems so clueless. The doctor’s office has sent the paperwork through 2x, and they seem to have it long enough to deny, but then the person at the next level seems to know nothing!)

      The option of in-home PT was never addresssed, but we don’t live very far from hospital where she is getting PT currently. Getting there is not a big problem, but paying for it may get to be, though we are fortunate that we can afford it at all. Though it is a definite strain on the budget, we will do whatever will help.

    • July 27, 2007 at 10:35 pm

      I am so sorry for your insurance problems. I remember we too had a cap on pt. What about calling the insurance, asking for a manager or case worker and just letting your emotions go? Sometimes you get lucky and get a compassionate person. Also, in Illinois, it did not work for us, but I know it does in Michigan, so maybe it would in your state, try calling the local MDA in your area. Some people on this sight have gotten help from them. Maybe they could help with pt. I know that they help with other things besides md, it’s worth a try.

      What about school, could there be some sort of iep that could inclute ot and pt? Just some thoughts, no idea if they are even possible. Keep strong and I will be thinking about you guys!

      We will say a prayer for Lydia and you tonight!

      Dawn Kevies mom 😮

    • Anonymous
      July 28, 2007 at 10:02 am

      Thanks for the ideas, Angel and Dawn.
      I will look into school PT, but right now she only has that temporary kind of iep–I think it is a 504? We thought that was all that was needed when we set up, as she was able to keep up with school work on a reduced schedule and mostly just needed assist getting around in the wheelchair (ie, someone to open doors, etc). At that time we ALL thought she would be either totally recovered by now or close to. She is getting better, but–not where she or we want to be yet. We are trying to take one day at a time. But school is looming!

      I didn’t know school district might offer PT but someone else recently mentioned that they should. But I wonder what kind of knowledge their therapist would have re: GBS? We like the PT we have, she has experience w/ adult GBS and has been very good. Maybe we could do both.

      Well, you’ve given me things to explore. BTW, the insurance co told my husband that one of the reasons she was denied was because she can walk ‘up to 400 ft’ with a walker. So they don’t really consider her ‘severely affected’. Grrr.

    • Anonymous
      July 28, 2007 at 1:29 pm

      You need to call your local COUNTY health department to see if they have supplemental health insurance for children with serious illnesses. Here, in MI, it is called Children’s Special Health Care Services. It is only for children, up to the age of 18, who have a serious disease or illness. The program is income based, meaning that some people don’t have to pay anything for it at all. We’re enrolling Emily in it & it’s going to only cost us $150 a year. They cover so many things including PT/OT.

      If you do have it where you live then they will send you some paperwork to have the dr fill out. The dr should fax it back to them & within a few weeks you will be sent some more forms to fill out. Once you return them then you will be approved for coverage. It’s really simple and SO worth it.

      I would assume that most states have something similar.

      Good luck.

    • Anonymous
      July 29, 2007 at 10:49 pm

      I am really sorry to hear about all the problems your having. I have met other patients who had similar problems. This is where your Neurologist really needs to go to bat for you/her. Get him/her to write a letter if needed mentioning the long-term issues and costs that are possible if rehab. isn’t done now. Once it has been established as medically necessary your ins. co. will usually back down. Good luck, let me know if I can ever be of any help.


    • Anonymous
      July 30, 2007 at 8:15 am

      Thanks, Kelly, for that idea…I have not heard of anything like that here, but will definitely check it out. We are fortunate to have some savings and so can afford this, but it is a stretch–especially not knowing how long this might go on being needed!

      Jerimy, your point about future medical costs if pre-emptive action isn’t followed now is a good one.

      Thanks to all for caring and sharing ideas!

      PS things continue to improve, so I am feeling hopeful on other fronts. It would be great if she could get the intensive therapy that the doc feels would further progress, but at least she is still improving. That makes me happy.

    • Anonymous
      July 30, 2007 at 1:18 pm

      Another idea but this is not done overnight. My state, it takes about 3 months to get approved.

      We have private insurance but we also have medicade for Dell because he is disabled. It has NOTHING to do with our income. It is because he is a “Disabled child living at home.”

      Not every state has this and as behind as Mississippi is usually, I can’t believe we have something this good.

      Just check into it.

      Good luck,