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The Fight for O.T., Part 2

We received a letter from our insurance company stipulating that Maggie’s Occupational Therapy (O.T.) was approved under specific conditions, specifically that O.T. was not listed in her Individualized Education Plan (I.E.P.) and not provided by her school. An I.E.P. is a document created for special education students that details their disability, their accommodations, the services they are entitled to, the frequency and duration of services, and learning goals broken down into detailed “bite-sized” objectives. It is a painstaking document to create and it took months of meetings and endless paperwork to create Maggie’s I.E.P.

We are receiving weekly Telehealth O.T. from one of the best providers in the country that specialize in children with developmental disabilities. Most of her services come from this provider and it took months of being on a waiting list for a slot to be available. She has had two sessions thus far (and will have one later this morning) and these sessions so far have been the most eye-opening of all of her therapies.

What I am learning and is painfully clear without my truly understanding its significance up to now is how much Maggie struggles with sensory processing. The senses are seeing, hearing, tasting, smelling, and touching, of course, but there is also the sense of movement and sense of self as in how the physical body feels based on external and internal conditions. Maggie does not process external stimuli the way another child does. Some things she feels intently and is overwhelmed by its sensation to the point of distress (like hair combing, regardless of how gentle), and others she is completely oblivious to (like feeling wet in her underwear. With potty training, we tried switching her to big girl underwear thinking she would be more cognizant of accidents. Not at all. She doesn’t even seem to feel that she is wet). These hyper and hypo sensitivities appear across all of her senses, which is why Maggie will flip a rug over, lie on the textured bottom designed to prevent slipping, and spend a solid uninterrupted thirty minutes rolling around on it because the sensation calms her. Certain sounds from her toys soothe her, like her singing toy dog, Ralph; she will rest her head on his belly like a pillow and press his buttons again and again, yet the frequency of baby sister whining is intolerable for Maggie. With food, certain textures are preferred and others are outright refused. She will not eat smoothies or whipped cream. Between cold and smooth, she will not touch it (yet, oddly, she used to love yogurt). She prefers crunchy finger foods, and will also eat gooey foods provided the gooey-ness is from melted cheese.

One of the strategies to deal with her sensory processing is deep massages. It is thought that the massages would de-sensitize her and also provide sensory input. I give her massages at any given opportunity, especially after bath time and whenever she needs to stop for snuggles. Starting with her shoulders, I use both hands to deeply press her arms in a tapping motion. I don’t slide my hands down her arms because she doesn’t like that. Firm presses are better for her. I work my way down her arms, all the way to her fingertips. I use both hands to press her thighs, working my way down to her toes. At first, she didn’t like it. Mommy, what are you doing? Stop it! But now that we’ve done it a few times, she seems to enjoy it. Even more important, she seems more receptive to hand-over-hand. She used to recoil when I try to help her hand, like fitting puzzle pieces in place, but now, whatever sensitivity about her hands is lessened. She will allow me to do hand-over-hand, at least with more frequency.

As her mother, my concern is helping her grow to be a functional human being. I’ve heard in education many times how the focus is on “the whole child” but when it is testing crunch time, then the focus redirects to how to bring up scores or other testing-related focuses. For example, a child who struggles to read at the 8th grade will learn testing strategies for a particular test question rather than allowing more time for independent reading which would address the underlying issue of fluency. There is simply not enough time during the school day to address the underlying cause, which is why parents must encourage independent reading at home, but that’s beside the point. My point is that the school system, based on testing accountability, is not going to focus its efforts on a time-consuming underlying cause that may or may not be reflective of an accountability test. Frankly, that's the parents' responsibility.

According to Maggie’s I.E.P., she is to receive three 15-minute sessions with her Occupational Therapist, which will be in-person sometime during her time at E.C.I. on Tuesdays. That’s it. Her goal for fine-motor skills says “In a small group setting with decreased distractions, Maggie will demonstrate purposeful play with preschool toys and materials using both hands with decreasing adult support. Objective 1: Maggie will grasp and use musical instruments and noise-making toys with moderate physical assistance; Objective 2: Using sensory strategies if helpful, Maggie will sit to complete visual-motor tasks for one minute; Objective 3: Maggie will use her hands to remove Velcro pictures and PCS symbols for communication purposes in a variety of activities throughout her school day.” In other words, her three 15-minute sessions will focus on functional play and, most likely, involve hand-over-hand physical prompting.

I spoke to her school Occupational Therapist. She will be starting sessions in two weeks so she hasn’t met Maggie yet, but is well-versed in her I.E.P. I explained the insurance situation and asked if it was possible to write a statement that I can provide to insurance that states that Maggie would benefit from hourly sessions from an outside provider in addition to her in-school sessions. Even without meeting her, I think logically more time allocated to therapy should improve her prognosis. Unfortunately, the school district has a policy that prohibits employees from getting involved in insurance conflicts. Simply put, she understood where I’m coming from, wished she could help, but she simply can’t without breaking school rules. I told her it was okay, and I appreciated her checking. She spoke to her supervisor and a few other people in the district to see if she could write a statement, but the answer was unequivocal no based on school policy. Her focus in the classroom, of course, will be on the task at hand and the immediate skills needed to complete that task. Just as in the case of a child with reading fluency issues, there’s no time to deal with the underlying cause because it’ll take too long.

Her Occupational Therapist with the private provider will provide a statement and will help me as best as she can to appeal the insurance requirements for O.T., but coming from the private provider is going to have less clout than if it were coming from the school system. It is unfortunate that the school system has that policy in place, which ties the hands of parents from seeking insurance-provided supplementary help for their children. The problem is the policy, not any individual. If I had any idea to anticipate this kind of trouble, I would have stipulated an addendum to her I.E.P. during those many meetings that would allow and encourage supplementary therapies, but now that it’s done, we can’t do that until her annual review.

If anyone has any practical suggestions that would sway the insurance company to continue with O.T., any advice is very much welcome. Her weekly O.T. is driving at her underlying issues, in addition to functional play strategies. We’re not going to lose it, but given her condition, it should be paid for by insurance because it is a medical necessity for her to improve her quality of life over the long haul.

The fight isn’t over.


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