Pasupatidasi's Blog

thoughts, poetry, life as it is…

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a light in the darkness

amidst the very mixed news regarding all things transgender came the awesome news this week, that medicare will begin to pay for treatment of gender dysphoria, including surgery.

this is awesome news for us! we are at the place as of this month, where such things as puberty blockers and much more counseling are the reality.  and since ziona receives medi-caid, this means i won’t have to wrangle and threaten lawsuits to get them to pony up the dough.

it is good news for every transgender person!

so altho there are still small minds out there that don’t understand what it means to be trans, at least the rules have been changed in favour of those who must put up with small-minded folk.

of course, there may exist a few more battles in acquiring this treatment for minors.  but it just got much easier to care for and support the needs of our transgender children.  if one cannot be kept from having a life-saving and time proven, non-experimental therapy as an adult, the same treatments cannot be withheld from pre-adults…i hope.

so we are on our way as of the end of this week.  ziona will be seen by her team at the ucsf child and adolescent gender clinic.  she has already been assessed as ready for the puberty blockers, and her psychiatric therapist has already deemed going forward as absolutely necessary to her health, and well-being.  and now, the expense will be covered as well!

so despite the nay-sayers, the small minds, and the previous reluctance on the part of medi-caid to cover expenses, she will as of this month begin drawing closer to the goal of being ‘all girl’, as she calls it.

a light shining through the darkness, for ziona….and many others!

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retractable claws

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.


doing the right thing

today i have been plying my ‘not-quite-ready-for-primetime’ computer skills, trying to get releases downloaded, printed out and faxed back to the various entities that might be able to help with wrangling medi-caid of florida into doing the right thing.

doing the right thing…

for some folk it is often difficult to simply make a practice of doing the right thing. for others it is the gold standard by which they model their behaviour. but for public entities such as medi-caid the right thing, no matter how obvious it may be, is something that eludes them.

one case in point. i am fatally allergic to even one bee sting. i can die within a matter of minutes from one prick of venom to my big toe and the closer the sting is to the heart, the less time i have before the curtain closes on my humble role upon life’s stage. but, instead of paying for the two bee kits necessary to keep me alive in such moments, medi-caid seems to prefer that an ambulance be called, (once even a med-evac helicopter was necessary) and then pay thousands of dollars, rather that the 30 to 60 dollars that the bee kits would cost.

so it was last week, whilst discussing ziona’s upcoming appointment with a pediatric urologist to decide how to proceed with regard to her undescended testicles, i was not fully surprised when ziona’s primary physician tried to prepare me, lest medi-caid refuse the surgery to simply remove the testes and insist instead upon the costlier and more difficult surgical procedure of ‘descending’ them.

altho, surely in the case of a nine year old transgender child who will subsequently have need of testosterone blockers, and who will in seven years, at age 16 undergo the absolutely necessary (for her) surgery to align her body to her true self, the right thing is clearly to opt for the surgical removal of them, NOT surgically removing them, then re-implanting them into the scrotum.

the latter option would terrorise my poor young daughter, who can’t bear to bathe except in a tub full of bubbles so she isn’t reminded of the ‘boy parts’. she can’t bear the ‘parts’ that are there now! i can’t imagine the jolt to her psyche suddenly having ‘balls’ would be.

mental health aside, there are ample reasons medically to opt for removal as well. removing them would exclude the need of testosterone blockers, for one thing. in addition, often undescended testes become (or are) cancerous. ziona already has one pre-cursor to cancer condition with the juvenile polyposis syndrome for which she has had annual surgery to remove polyps from her colon every single year since her third birthday.

despite all the reasons and evidence for how to proceed in doing the right thing, i have no illusions that medi-caid will be reasonable. so i have already contacted a reknowned psychotherapist, member of the board of wpath and author of many scholarly articles in the scientific community who will speak on behalf of ziona with regard to what is the right thing to do. and i’ve also contacted the national center for lesbian rights and have a lawyer even now drafting official sounding letters intending to stave off an outright refusal by either the urologist, surgeons, or medicaid to do the right thing.

society sometimes needs help, a little shove in the direction of fairness, openness, compassion. it’s constructs need a bit bigger shove due to their being entrenched in policy…and i will not shy away from even the biggest bureaucracy to ensure that as far as my daughter is concerned, everyone involved in such important decisions as the ones we face next, will be appraised of what is the right thing to do and is made to do it!.

that, is my own ‘right thing’, as her mom, to do.