Therapy question (mainly an insurance vent)

[GoVanGogh]

Two neurologists have examined DS and agree that he needs a min of a year of OT and PT. We have an MRI backing up dx.

 

So here we are, six months post-dx.

 

DS has had six months of weekly OT. He can, for the first time ever, write without shaking from tremors or without losing his pencil/grip due to muscle spasms. But he still has such a long way to go. It seems we have hardly scratched the surface on some of the issues.

 

We just started PT two months ago. The doctors were hoping that putting DS in a few targeted sports would be enough to help even out the muscle tone issues. But DS had two injuries in three months, so they had us pull him from sports to focus on PT.

 

In all of this, our insurance has paid for exactly two therapy sessions. We have an insanely high deductible and just met it last week.

 

Today, we were notified by insurance that they want us to stop all therapy to see how much DS regresses before they consider covering any additional therapies. Not "if" he regresses. But "how much," because they expect him to regress but they need to see how much to gauge any future services.

 

(Our insurance company uses a third party to verify services and it is this third party, not our actual insurance, that has requested that. But our insurance won't even talk with us, everything must go through third party.)

 

DS has a life-long neuromuscular issue.

DS will be starting middle school and can only now write more than a few words without muscle spasms. Needless to say, we are far behind in writing due to being so late getting this dx and now losing school time for therapy.

 

We are just now starting to see some progress and they want us to stop and see how much progress he loses?

 

 

Questions:

Is this routine???

Would you consider stopping therapy?

Am I being unreasonable for not wanting to?

 

(Edited to remove personal info re: dx)

[Harriet Vane]

While I cannot comment on specifics I can say this--

 

Their request is completely ridiculous.

 

Throw a LOT of documentation at them, repeatedly. Get the doctors to write it up in an official way. Also, make sure you have a current assessment that shows clearly what his current status (and therefore current needs) are.

 

It is absolutely unacceptable to purposely with hold services to see how bad it gets before they consider continuing to pay.

[Julie of KY]

This kind of thing drives me crazy and you are not unreasonable for not wanting to stop therapy.

 

As a parent, I am fortunate to have good insurance and have never been asked to stop therapy for the reasons given above. There should be ongoing evaluations to determine if he continues to need therapy, but I don't think the insurance company should make the medical decisions.

 

As a physician, I had to deal with this lots as many insurance companies.Sometimes I could call and write letters documenting the need for therapy, but other times I just felt like I was hitting my head on a wall trying to get my patients the services they needed.

 

If I were you I'd keep calling the insurance/doctor and try to get services. As to whether to stop therapy you have to consider the pros and cons both financial and medical and decide what risks you are willing to take.

[GoVanGogh]

We were in the process of filing yet another appeal with letters from the neurologist and therapists when we got word today about stopping therapy. We are waiting on one final letter - from the neuro - before we submit that appeal. To me, stopping therapy is just crazy absurd. They know he will regress, but want to see if it is within an acceptable range. The kid only recently can write more than his name and a simple sentence. He has no where to regress to! DH and I have already decided that we will not be stopping therapy. We have already wasted too much time trying to get a dx. Now that we are on a forward path, we need to continue. Insurance's main issue is that they don't want to pay for a birth injury on an older child.

[itsheresomewhere]

Do you have a case worker with your insurance? If not, demand one. It can help stop some of the complete BS. Also, it is very common to for insurance to only approve six months at a time. Get the paperwork worded for six months then re-evaluate and that can make it easier to approve.

[Tokyomarie]

My mantra would be, "My child has already had "x" number of years with zero therapy or help of any kind. He IS ALREADY at the point where he cannot function in school and in life skills because of his neurological condition. We have already waited way too long for help. Now that he is finally in therapy, we are not willing to keep him from making progress in his ability to develop skills necessary for becoming a fully functioning adult due to your short-sightedness regarding payments. Or something to that effect. This is the story I finally gave to our insurance company several times over when they tried to renege on paying for our son's evaluations. I emphasized that his difficulties did not impact only school, but also life skills and that his ability to hold a job and become a contributing member of adult society in the future depended on his getting help NOW. By the time I told the story about 3 or 4 times, our case finally got kicked into a higher level review process and payment was approved.

 

I have also had success in getting payment approved (in this case, for my own care) by having the physician in charge write a letter of justification.

[Alessandra]

I didn't see anything about your insurance contract. How many therapy sessions does it allow? A lot of contracts have a limit, like 6-8 sessions; some will let you repeat the cycle for a limited number of different diagnoses. So, the first thing I would do is to read your contract carefully.

 

Some insurance companies have clinical policy bulletins on the physician portion of their websites. Here, for example, is one from Aetna:

 

http://www.aetna.com...0_399/0325.html

 

Imo, it's good to know as much as possible about your insurance company when arguing. For example, in your case, you mention an age limit for a certain type of injury -- is that policy written in your insurer'e documentation?

 

One thing that I would definitely do is to keep a record in a bound notebook (not looseleaf), using a pen (not a pencil). Record every telephone call, communication, even times you try to call and can't get through. Keep a record of the codes your provider used for both the diagnosis and the treatment for each visit. Call repeatedly about the same issue. In my experience, you can get quite different answers from different people. Find out about different departments you should be talking to -- find out if the case manager pp mentioned is available. Your record can be a valuable legal document in case attorneys are involved.

 

Here is a book called Making Them Pay, about getting the most from your coverage.

 

http://www.amazon.co...making them pay

 

Routine: Yes

Unreasonable: No

Stop: Depends on finances. Are there any other places you could get this therapy, for example, school system?

 

I am sorry for what you are going through.

:grouphug:

 

ETA If your insurance is through a large employer, going through the employer may give you some leverage.

[Tiramisu]

I'm also wondering if there are county or state services you can qualify for.

[GoVanGogh]

Good news! (For now, at least, but we will take it!)

 

Insurance notified us late on Friday and said they would cover another month of therapy. We have no idea what prompted the change, but are happy to get another month covered.

 

 

Our insurance policy only states that they cover x amount of therapy for injuries, but says nothing about therapy that is linked to a medical dx, which DS has. Even then, our insurance only approved 1/5 of the amount of sessions that is written in our policy. We were wanting - at least - the full amount of sessions they say they cover. But neurologists say that he needs and qualifies for unlimited, due to the medical dx. Therapists and neurologist both said that, dealing with a neurological condition, we cannot stop therapy at this point.

We can pay out of pocket. It would hurt, but it isn't that DS wouldn't get treatment if insurance doens't cover.

[GoVanGogh]

Do you have a case worker with your insurance? If not, demand one. It can help stop some of the complete BS. Also, it is very common to for insurance to only approve six months at a time. Get the paperwork worded for six months then re-evaluate and that can make it easier to approve.

 

Insurance is through husband's job. Insurance company uses a 3rd party to verify services. But DH's company has their own 3rd party to help employees. This person has been less than helpful. DH filed a complaint against her on Thursday, before we found out insurance requested we stop therapy. Then Friday, they changed course? Curious timing.

 

My mantra would be, "My child has already had "x" number of years with zero therapy or help of any kind. He IS ALREADY at the point where he cannot function in school and in life skills because of his neurological condition. We have already waited way too long for help. Now that he is finally in therapy, we are not willing to keep him from making progress in his ability to develop skills necessary for becoming a fully functioning adult due to your short-sightedness regarding payments. Or something to that effect. This is the story I finally gave to our insurance company several times over when they tried to renege on paying for our son's evaluations. I emphasized that his difficulties did not impact only school, but also life skills and that his ability to hold a job and become a contributing member of adult society in the future depended on his getting help NOW. By the time I told the story about 3 or 4 times, our case finally got kicked into a higher level review process and payment was approved.

 

I have also had success in getting payment approved (in this case, for my own care) by having the physician in charge write a letter of justification.

 

Your post really hit me. That is exactly my feelings - neurologists and therapists have all said that DS needed therapy from birth. We tried to get him dx earlier, but no one would listen to our concerns. He actually went through county services (full evaluation, qualified only for speech) when he was a toddler, but was too young at that time for his main symptoms to really show up. (At that time, the worse symptoms would have still be age appropriate.) He has skills (writing, for one) that he is sitll years behind on. The thought of stopping therapy when we are finally getting somewhere makes me twitch.

[itsheresomewhere]

Insurance is through husband's job. Insurance company uses a 3rd party to verify services. But DH's company has their own 3rd party to help employees. This person has been less than helpful. DH filed a complaint against her on Thursday, before we found out insurance requested we stop therapy. Then Friday, they changed course? Curious timing.

 

The actual insurance company should have a case worker available to you not just the 3rd party. If they act like you have three heads just go up the chain to get one. This wouldn't be a certain company that starts with an E is it?