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Frakin' Insurance! A.K.A. Getting Additional Coverage for Speech Therapy
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Thread: Frakin' Insurance! A.K.A. Getting Additional Coverage for Speech Therapy

  1. #1
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    Frakin' Insurance! A.K.A. Getting Additional Coverage for Speech Therapy

    Hi everyone,

    I could really use your insights and experience on a very frustrating insurance question.

    At four years old, Ethan is still essentially non-verbal, with a daily vocabulary of about 15 words. Since diagnosis three years ago, his speech therapy has often been interrupted by BMT demands, but he's been getting services 3x per month since the fall of 2011.

    Ethan is eligible for 25 insurance covered neurodevelopmental rehab appointments per year, be they speech, OT or PT. Early in January, we made the decision to stop OT services and use those appointments to focus on his speech needs. Now that we're halfway through 2012, Ethan has used up most of his allocated appointments; he's got about 5 left through the end of the calendar year.

    In January, Ethan's speech path told us that she's had a good success rate securing insurance coverage for additional speech services. However, when she submitted her request for additional coverage last month, we heard back that 1) (Oregon) Regence Blue Cross/Blue Shield won't even consider that request until all of the covered services are used up and 2) it's extremely rare for them to extend a benefit.

    A couple of weeks ago, Ethan's speech path and I decided that it made sense to ration Ethan's 5 remaining covered therapy appointments so that he would get at least one covered appointment per month to maintain his current level, or at least to slow the loss of skills he's recently gained.

    When our speech path heard back that BC/BS would not even consider her request, I picked up the fight. The insurance company has said that the contract that they have with Sarah's employer no longer even has a provision for requesting additional coverage--it was removed in the new policy period that started last month. However, requests received are sent to an MD for review.

    I've told them that I am going to do a few things. 1) I'm going to file a formal grievance about the fact that they will not even consider a request for additional coverage until our current benefit is exhausted. In the case of allocating Ethan's remaining rehab benefit, it seems self evident that we would maximize the utility to him by rationing the remaining sessions until such time has we have an answer about additional coverage. I have also requested letters of support and documentation of need from his current speech path, the University of Minnesota Neuropsychologist who last evaluated him, his UMinn transplant doctor, his PCP and his geneticist. I have told BC/BS that I'm going to submit all of these materials as soon as I receive them, irrespective of whether or not Ethan's used his full benefit.

    In the previous health insurance benefit book, there was a provision for requesting additional coverage that said they would consider such requests when it would result in cost savings and was medically necessary. I think I can make a case that it makes more sense for them to approve additional sessions at ~$125/ pop then it does for me to order a $4,000 augmentative communication device and have them pay for it under that unrelated benefit line.

    On the medical side, I intend to make a few points: 1) verbal communication is an essential life skill; 2) Ethan is at a critical age for language acquisition; 3) Ethan status post transplant means this post transplant window is an essential time; 4). Ethan is making progress.

    I think I can prove the argument, but I'm still unsure if I'll win the fight. Is there anything I'm overlooking. Is there anything that has worked for others when fighting for additional insurance coverage?

    I've said all along, that I can deal with all of the @#$@#$^ that comes with MPS, but at some point I want to have a conversation with my son. So far I haven't been able to do that. But we are making some progress, and it would pain me to see that slip away.

    I do recognize that rehab services are as much about educating the patient/parents as it is about providing direct services. I know that if I loose this fight, that's not the end of it, that I will just have to make sure that I provide the services that insurance is no longer covering. But I don't want to loose covered access to his speech therapist without a fight.

    Does anyone have any ideas?

    Thanks!
    Todd Waddell
    Portland, Or
    E-mail: toddwaddell@zoho.com

    Dad to:
    Caleb Waddell (unaffected)
    Ethan Waddell MPS-1 Hurler's (dob 07/15/08. 1st BMT 10/29/09, 2nd BMT: 4/13/11)
    http://ethanwaddell.blogspot.com

    (Believe it or not, absolutely no relation to Kelly Waddell, or to her Caleb. No, really. I know, strange, right?)

  2. #2
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    I am sorry you are going to have to fight your insurance company, I feel your pain. We fought for a year with ours over a sleepsafe bed and lost. I honestly think it would have been less painful to have spent the time continuously beating my head against the wall. It is their job to say no and be heartless.

    As far as speech therapy, Jake gets his services through the school district. Is Ethan in preschool? Jake currently is getting 90 minutes a week with his speech therapist and 90 minutes a week with his hearing impaired therapist.

    If your insurance company will not provide the services I would pursue it through the school district because time will just waste away while you fight with the insurance company.
    Tara

    Mom to Hannah and Luke (9 - twins) unaffected and Jake (7) MPS IIIA

  3. #3
    I think your process and arguments are very sound and effective. If that doesn't get you where you're going, not sure I could suggest anything better.

    We actually have NO coverage for speech therapy at all and no way to obtain coverage. It is simply not part of our plan unless you have autism (exception). Case gets 2 hours of 1-1 speech therapy per week through the school system, and while I've not been exceptionally pleased with other aspects of school related services, his speech path is top notch. She integrates iPad with everything and I truly believe he would not have retained so much speech before the trial and would not be adding new concepts regularly (like why sentences, etc.) were it not for her hard work. I'd check into who they have and their philosophy and results and see if that might be less headache and actually better in the end since it is one location with school.
    Melissa, Mom to Tyson (9), Brock (7), and Case (6) - MPS II
    Ebook: Calmer: Medical Events with Cognitively Impaired Children
    SavingCase | Twitter | Facebook

    ~ The effectual fervent prayer of a righteous man availeth much.

    ~ I have heard your prayer and seen your tears; I will heal you.

  4. #4
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    Quote Originally Posted by Jake's Mom View Post
    I am sorry you are going to have to fight your insurance company, I feel your pain. We fought for a year with ours over a sleepsafe bed and lost. I honestly think it would have been less painful to have spent the time continuously beating my head against the wall. It is their job to say no and be heartless.

    As far as speech therapy, Jake gets his services through the school district. Is Ethan in preschool? Jake currently is getting 90 minutes a week with his speech therapist and 90 minutes a week with his hearing impaired therapist.

    If your insurance company will not provide the services I would pursue it through the school district because time will just waste away while you fight with the insurance company.
    I have wandered if they are paid bonus money everytime they say NO. It is so irritating. School is actually the easiest place to get these services. But before Steven was in school I took him to Some orgainzation thru the county , I think it was the Department of Human Services and also to Easter Seals for speech therapy and the cost of services was minimal. It still adds up! But it is worth looking into! Good luck!
    Valerie Barnett

    Steffany (06/29/95 to 02/26/11) MPSIIIA
    Stevie "BammBamm" (12/14/97 to 12/31/12) MPSIIIA

  5. #5
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    Is there any way for him to qualify for Medicaid? A lot of times it is easier to get therapy services covered long-term through Medicaid than insurance. Have you looked into waiver programs in your state? A lot of times they are dependent on a certain level of cognitive impairment, though, which can make it harder for transplanted kids to qualify.
    Robin
    Mom to Avery, 14 yrs
    ^^Logan^^, MPS II (6/14/03-3/15/15)
    and Kara, 9 yrs

  6. #6
    If there is an Easter Seals in the area, they are suppose to offer speech therapy services.
    Misty

    Our son, Will was diagnosed with Sanfilippo, MPSIIIA in June, 2007. He is 6, born February 10, 2003. His loving older sister Nicole is 10.
    http://www.miracle4will.com

  7. #7
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    Could you get Mn's neuropsych to add a autism dx even say a high functioning dx so that he would qualify for Advanved behavioral analysis (ABA) type services where they come in 2x's a day for 3 hours each time usually 5 days a week and they work on all areas but specifcally what is lagging. My nephew now 6 didnt really start to talk till 3 1/2-4 and he now out-surpasses his cousin - same age in words, speech fluency, etc., and ABA is to thank. Also look in to county programs - here there is early childhood after age 3 (birth to 3 program) and done through the school district.
    Erica J. Thiel
    MPS I Hurler-Scheier, Age 30
    "Life is A Journey with a Past, Present and Future, But for Now all we have is Today"
    www.rarelydefined.blogspot.com

  8. #8
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    Thanks everyone. This is all very helpful. Thanks especially for reminding me about Easter Seals. They may turn out to be our best option. Their Oregon therapy center is about an hour from here, but we can swing that if we need to. I'm going to ask Ethan's PCP for a referral on that this week, so we'll be on their list if we need it.


    Erica, remind me, are there any other Hurler's kids with an attached autism diagnosis? I know that autism is a broad spectrum, but on the face of it, I don't think I see autism like behaviors in Ethan.

    Robin, fortunately, or unfortunately, we don't qualify for medicare.

    The school system is a possibility. Ethan already receives early intervention preschool services from them. We have an IFSP meeting on Friday, and I'm going to explore the possibility of taking that from 4 hours per week to eight hours per week if the additional speech sessions get denied.
    Todd Waddell
    Portland, Or
    E-mail: toddwaddell@zoho.com

    Dad to:
    Caleb Waddell (unaffected)
    Ethan Waddell MPS-1 Hurler's (dob 07/15/08. 1st BMT 10/29/09, 2nd BMT: 4/13/11)
    http://ethanwaddell.blogspot.com

    (Believe it or not, absolutely no relation to Kelly Waddell, or to her Caleb. No, really. I know, strange, right?)

  9. #9
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    Yes Emma in Canada does - and I think (but not positive on this actually) Bridget in the East Coast may to? As does Cody Merrell although he is H/S and not done therapies.
    Erica J. Thiel
    MPS I Hurler-Scheier, Age 30
    "Life is A Journey with a Past, Present and Future, But for Now all we have is Today"
    www.rarelydefined.blogspot.com

  10. #10
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    I know some have had the "autism" diagnosis added, purely to get the services they need. It makes me angry that it is needed, considering the symptoms are MPS related.

    As others have said, we get Caleb's speech therapy through our county school system, so it's not determined by insurance. Once a week, for 30 minutes, he gets speech at school. When adjustments are needed, St. Jude makes a report for me for what is needed, and we call an IEP.
    ~ Kelly Waddell

    Mom to:
    Caleb Allen (12/06/00)
    MPSI- Hurler; BMT (06/21/02)

    Lord, Keep your arm around my shoulder,and your hand over my mouth...AMEN..!!

    http://www.caringbridge.org/visit/calebwaddell

  11. #11
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    Quote Originally Posted by ClbsMm2000 View Post
    I know some have had the "autism" diagnosis added, purely to get the services they need. It makes me angry that it is needed, considering the symptoms are MPS related.

    As others have said, we get Caleb's speech therapy through our county school system, so it's not determined by insurance. Once a week, for 30 minutes, he gets speech at school. When adjustments are needed, St. Jude makes a report for me for what is needed, and we call an IEP.
    There are also 2 I know off hand who have actual real diagnosis through all the testing and get the services as any other kid would get. As you said Todd, I doubt Ethan has autism but it could help him get better, more continous services - ABA has done absolute wonders for my nephew communication wise.
    Erica J. Thiel
    MPS I Hurler-Scheier, Age 30
    "Life is A Journey with a Past, Present and Future, But for Now all we have is Today"
    www.rarelydefined.blogspot.com

  12. #12
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    We just received notification from Regence Blue Cross/Blue Shield denying our appeal for additional speech therapy coverage for Ethan. That's not necessarily surprising since everyone inside the company and out said that they never approve these requests. We submitted letters of support from three M.D.s, one PhD, and two speech pathologists. The letters showed that Ethan needs this additional coverage, that he's benefiting and making progress from the therapy and that intensive speech therapy is the standard of care for Hurler Syndrome. The part I don't understand is that they said that our appeal is reviewed by an M.D. for medical necessity. We clearly demonstrated medical necessity. So how is their evaluation process not inherently B.S.? Why say you have a medical review process when you don't?

    Todd Waddell
    Portland, Or
    E-mail: toddwaddell@zoho.com

    Dad to:
    Caleb Waddell (unaffected)
    Ethan Waddell MPS-1 Hurler's (dob 07/15/08. 1st BMT 10/29/09, 2nd BMT: 4/13/11)
    http://ethanwaddell.blogspot.com

    (Believe it or not, absolutely no relation to Kelly Waddell, or to her Caleb. No, really. I know, strange, right?)

  13. #13
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    Does Oregon have a Department of Insurance where you can file a complaint/appeal against your insurance company where they will reivew the case?
    Tara

    Mom to Hannah and Luke (9 - twins) unaffected and Jake (7) MPS IIIA

  14. #14
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    We were getting PT for Aisling which the insurance was covering then suddenly after 8 mths of treatment they said that they were not covering it as ti was not medically necessary. WE appealed and won as 90% of the time when people get these letters they don't fight it. If we had lost the appeal the next step was to file a grievance with the state of Illinois. This may be an option for you in your state, the State takes up the case then with the insurance company. Hope it works out for you all, I would also push for services in school, our insurance did ot cover SLT for Aisling so we paid it ourselves at that time 7 years ago it was 75 dollars per hour but she was a godsend and gave us a great home program to work on with Aisling.
    Best Wishes

    Celia,
    mom to Aisling 13 (MPSIIIA) and Peter 10

  15. #15
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    If they are denying it based on medical necessity, I would absolutely appeal. If they said it wasn't covered under your plan or something, that would be harder to appeal. I really think that insurance companies deliberately make things as difficult as possible so people will give up and they will save money. He does at least get speech through school in the meantime, right?
    Robin
    Mom to Avery, 14 yrs
    ^^Logan^^, MPS II (6/14/03-3/15/15)
    and Kara, 9 yrs

  16. #16
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    Secondary insur

    I dont think you've ever mentioned a secondary insurance but want to ask anyways do you have this or no?

    The reason I ask is that my insur recently switched from a point of service plan to a HMO (yuck) and while about 1/2-3/4 of my core providers where approved under a special approval as 'in-network out of network providers" there are a few that where not accepted and I was supposed to transition to someone w/in the Insur network (Dean) and my Case Manager and I interviewed various specialists to see who was going to take my care. Well in 2 cases I wasnt comfortable switching bc the care I am getting is superb and the providers are an integral part of my core team (pain mngmt) and the other dr (UofMn spine which I am appealing) is someone that no dr can replace w our unique neck and thoracic issues and he did my first neck surgery. My neurosurgeon has done 2 lumbar spine surgeries in addition to placing the lumbar shunts but the neck is a whole nother ball game. Anyways all this jibberish aside my reason for asking and writing this is if you have a secondary insur and the service is denied I was just informed (by 2 different people 1 being at medicare) as either the provider is out of network) as is my case or service not covered then the secondary insur will cover the provider or service atleast that is the way it is w medicare (and I would then think medicaid maybe to..)

    Anyways this may not be helpful but worth sharing for you guys and for other families to..
    Erica J. Thiel
    MPS I Hurler-Scheier, Age 30
    "Life is A Journey with a Past, Present and Future, But for Now all we have is Today"
    www.rarelydefined.blogspot.com

  17. #17
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    Resubmit an appeal, especially if it's in your coverage. It's the hands the papers end in, lesson learned! One time denied, next time no questions asked. It's whoever is working and the mood they are in.
    Good luck!
    Jamie, mother to Jack (MPS II)

    www.heresjack.com
    www.savejack.ca

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