Pasupatidasi's Blog

thoughts, poetry, life as it is…

retractable claws

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everyone has probably some working understanding of the reference to a mother bear as a way to depict the passion of parents’ protective instinct toward their children. it is an apt metaphor after all for many of us. ready to defend our young against bullies, protect them against dangers, and support them as they grow into the persons they will eventually be.

for parents of kids who are neuro-diverse, differently-abled, transgender and so on, the opportunity to rise to the occasion of keeping our children safe in our often biased and judgemental society will present on a fairly regular basis. after all, despite the changes for the better that each incremental rung of our stairway to heaven has brought, many folk are slow to become enlightened about things that are outside the realm of their own experience or opinions.

so we have to advocate for our neuro-diverse children by insisting that schools follow the i.e.p established to guarantee a child’s best possible outcome in school, we have to make sure that the environment they encounter while in the care of teachers, daycare providers and others will be safe for our children and responsive to their needs: that a differently abled child has ramps for their wheelchairs, alternatives to activities from which they must be excluded, that our transgender children feel comfortable in being themselves, are allowed to use the bathrooms pertaining to their affirmed gender. are called by the correct pronouns.

when it comes to getting our transgender kids the appropriate medical care and treatment, as proscribed and set forth in protocols and standards of care established by specialists in the field, we often find ourselves in the deep end of the pool. insuarance companies try to side-step responsibility as do governmental programmes that are supposed to intervene for those who can’t be insured. rights to coverage varies from state to state, and as if this weren’t frustrating enough we must often deal with the attitudes of medical providers and others involved in the process.

since mid-august, upon our return from the ucsf appointment at the children’s and adolescent gender clinic, we have been trying to get the bone density scan that the endocrinologist and head of that program ordered for ziona. it is a necessary part of the protocol as puberty blockers are understood to lessen bone density. so in order to be safe in going forward, a baseline for zee’s bone density is needed.

the nurse who co-ordinates such things at the pediatrician’s office back here in florida worked at trying to find a code whereby medicaid would cover the scan for weeks, even calling back to the endocrinologist for help in finding a diagnosis that medicaid would recognise and thus pony up for the scan. but by monday, the day before the appointment to have it done, there had been no headway made. i had been in contact with cms, a programme here in florida which covers things for children that medicaid doesn’t or wont, only to be told that governor scott had frozen their funds so that only oxygen tanks or inhalers for kids who will die without them were being approved at this time.

the cms worker suggested i call medicaid’s local office directly, but i knew that the nurse at the pediatrician’s office had already been trying to work with medicaid to get the procedure covered, with no result.

so i got my claws out, ready to make like the mother bear.

i dialed the number, and after being connected to the person who was in the position to help with the matter, began to say what was happening. that the pediatrician’s office was being told by medicaid that there existed no auspices under which a bone density scan for a child as young as zeeona, could be approved, when no underlying condition is presented to show need. the women from medicaid listened, then said that the doctor ordering the scan must provide a diagnosis with a correlating code or there was nothing that could be done.

i flexed my claws, began to unleash the mother bear warning growl.

my daughter is transgender, i told her. the protocol and proscribe treatment for this medical condition, as recognised by boston’s children’s hospital gender clinic and dr. spack, who advises the ucsf programme into which zee has been registered, includes a bone density scan in order to ensure that the effect of the gnrh (puberty blockers) which would soon be prescribed, aren’t impacting the child’s bone density too much. therefore a baseline density needed to be establish. i went on to explain that both federal and state laws protect lgbt people’s rights including the right to necessary therapies and treatments recognised as appropriate to their medical diagnosis. i intimated that perhaps the florida medicaid would have to play “catch up” if they dont have assurances in place that will cover my transgender daughter’s medical needs, simply because those needs pertain to her being transgender.

i took a breath.

what happened next both surprised and delighted me.

instead of the woman continuing to tell me there was nothing she could do, she told me that she knew exactly which code to use in this instance and told me to have the billing department call her and request them. by later that same day, just a half an hour before the scheduled time for the procedure, i received word that all had been settled, the procedure would indeed be covered by medicaid.

from the time i first realised that ziona may need me to fight at some point for her rights to the proper treatment i have been busy getting our ducks in a row; a lawyer through the National center for lesbian rights, doctors, specialists and others who might support us with their knowledge, standing and expertise should arguements need to be made on her behalf, and my own readiness to rise to battle, involve legal action and media if it became necessary. i told my mom just the day before, “well, this might be the place where i must begin to fight”. she smiled and said she knew i’d be fierce.

instead i get to retract my claws, stand down and count my blessings that so far, a battle hasn’t been necessary.

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