learning to navigate the world, j-bear style

Insurance and Interludes.

I am gearing up for a battle. I am not sure who it is against, if it is versus Blue Cross Blue Shield of MA or if it is versus my son’s doctor’s office.

Here’s the tale.

I requested, in early 11/2012, that a referral be processed to the Occupational Therapy clinic my son was about to be evaluated at and now receives therapy through. No response as you only speak to a voicemail. Several weeks in, the clinic received no referral. Not only did I call them, I also brought over a sheet with a list of required referrals to Occupational Therapy at said clinic for 2012 and 2013, for his evaluations at Floating Hospital, etc. Everything was laid out in very specific detail. I ended up giving them this page TWICE.

Fast forward to this month. The referrals have never appeared. I call and speak to the office manager, who forwards me to the one woman who processes referrals. She hits me with “you never requested them.” I hit back with dates, times and visits on which I gave them the printed list of what he needs as I know it’s a lot. They send referrals. The referrals are for the wrong dates and wrong person. I call back. We return to the “you never told us” line. I repeat all the times I told them. I get a hang dog return call saying it’s all straightened out.

OT clinic calls me and states they got the referrals. For speech therapy. J does not begin speech therapy for a month and I had mentioned it to no one at all at this point amidst the effort to sort out the occupational therapy nonsense. I call back the woman at J’s primary care doctor. She huffs, sighs, says she’ll “figure it out”. A couple of days later I get a sing-song voice mail saying it’s all taken care of but you only get eight visits for the year, good luck and have fun!

Are you kidding me?! This child, by all recommendations, needs far more than eight visits in a calendar year!! He goes twice a week! We’ve already blown through the 8 visits and it’s not even March!

Now I have to fight someone to get this straightened and face the fact that I might have to remove J from a clinic that is amazing for him to another that might not meet all his needs quite so well. I am nauseated and frustrated at the idea of this. These women, alongside with his ABA therapists and EI case workers, have been life changing to him. This combination of team members has fit together just right. I do not want him to go somewhere he is not so well cared for and I am uneasy about our other options. For now, I am stuck in the hurry up and wait.


Yesterday morning at the OT clinic, a boy of about 8 or 9 came into the waiting room while we awaited J’s appointment. My guy has been working hard on greeting people, which comes across like Wall-e greeting E-va for the first time. He walks up and gets a little too close, then says slowly “hiiii” with a funny little wave. There’s a warm smile to match all of this but it’s still that little alien odd. Most children either ignore him or they shrug it off and either play with or around him, no big deal. This little boy made my day and I so wish I had thought to tell his dad what a good boy he has. He said hi back to J and asked him what he was playing, then tolerated J’s staring and curiousity. He was very kind to him in his own way. 

I appreciated that a great deal. Some kids just get it, and this kid was one of them.


What happens in Parent Group doesn’t always stay in parent group. A final quip:

You haven’t lived til you’ve talked about poop charts and flame throwers in the course of the same conversation. 


  1. wanderingendlessly

    As the secretary of an amazing developmental behavioral pediatrician in the past I suggest you make an appt to speak to the doctor face to face. If they won’t give you one (insurance wont pay unless there’s a diagnosis, blah blah blah) tell them there are CPT codes to complete forms under the current diagnosis and to figure it out. If you still don’t get anywhere SHOW UP! Demand to speak to the doctor and the practice manager and tell them what you want and that you will take it with you. If its done on the computer you will take a print out of the screen. Don’t settle for anything less. You also want them to write a letter of medical necessity for additional visits. And call your insurance company to tell them what you want. It’s time consuming and it shouldn’t be. Your time should be spent with your son and not doing this ridiculous work. But you CAN do this! Good luck. Keeping you in my thoughts!!!

    • nicole

      He was diagnosed on a preliminary basis in August (they knew it was autism, they weren’t sure of the extent and if it was ASD or PDD or PDD-NOS) and then formally on 2/11 with Autism Spectrum Disorder, Sensory Integration Dysfunction and a few other things. He has all of that on paper and I actually handed that paperwork to the primary care doctor whose practice is giving me such grief. His doctor is on board for all of this, it’s sadly her ridiculous office staff that’s being difficult.

      Thank you SO very much for your advice! I am going to do just that, go straight to the office and speak to the office manager about all of this because this should not be so painful. I understand that pursuing all necessary care for a child with autism is hard but one inept person makes it that so very much worse! If I cannot get satisfaction, I am going to just keep going up the ladder. He is so young and there is such possibility for him to overcome so much – It’s my duty to fight for every opportunity and I am not letting one person who can’t read a piece of paper correctly deny him needed care.

      • wanderingendlessly

        Go after the practice manager or site manager of there is one. NOT the office manager. There is a difference. The site mgr is involved in the clinical side as well as the clerical side. Email me if you need me. Look me up at familiesofinmates.wordpress.com. Be well!

        • nicole

          Thank you! I never would have known that. I will definitely ask for the site manager and I’ll update as to how things turn out.

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