Adulting while trans: Navigating disability insurance as a way to help bottom surgery become a reality
How do you get by financially while being out so long for surgery? I don’t want to be grim—but if you hit complications or extended leave, it could ruin you financially. If you have access to disability policies, they can help someone from a rather middle-class perspective approaching bottom surgery. They helped me pay bills and childcare while I was out-of-state recovering from phalloplasty (and also caring intensely for unrelated mental health needs). If you’re savvy, your plans can actually pay out more than your medical bills.
I’m going to go into using:
- Hospital Indemnity
- Short Term Disability
- Personal legal insurance
- Accrued Sick Leave
- Long Term Disability
- Disability Gap Insurance
The lay of the land
As far as my context, I have a steady, salaried union job with benefits. I have access to credit and better-than-average health insurance. Like most middle-class families, we didn’t have *anything* like a nest egg of $20k or $30k to blow through. How can you use short term and long term disability pay to help carry you through the recovery period?
My employer offers short term and long term disability insurance, FMLA (family medical leave act protected time off), personal legal plans, and a hospital indemnity plan. Someone comes in to sell us gap insurance plans, too. I wanted to find out if I could use these to protect my job and get money while I was out for transgender bottom surgery, specifically phalloplasty. Maybe you need it to pay out for time off for metoidioplasty or vaginoplasty– the biggest difference is you might not need long term disability for this, due to the procedure potentially being one-stage or stages being less protracted.
To dig into phalloplasty time off, phalloplasty usually takes a year to two years to complete. While staging can vary by surgeon and your plan, without complications, taking my surgeon Dr. Coon as an example, you will need a *bare minimum* of: (0) 3 weeks for hysterectomy; (1) 6-8 weeks for the penis and nerve hookup initial healing, plus graft initial healing, and stage 1.5 surgeries to transfer split thickness graft to donor site; (2) 3-6 weeks for scrotoplasty, glansplasty, vaginectomy, and urethral hookup; (2.5) 3-6 weeks planned for additional recovery from any revision or complication surgeries; (3) 3-6 weeks for erectile implant and testicular prosthesis. I did this in just under one calendar year, in great part through the help of these insurance policies.
Some insurances and protections you might want to obtain for phalloplasty or another bottom surgery—Really, I recommend these for all trans people seeking medical transition.
FMLA for bottom surgery
FMLA – When you have a medical thing coming up, you submit certifications of the medical need, and your job will be protected. This protects you from being fired when you need to be gone for a serious medical reason if you have been working for the employer for long enough and the company is large enough to offer FMLA. The company does not see the forms you submit as evidence. They go to a third party and are confidential. It does not cost or pay out to have FMLA. Cover your ass and file for FMLA. If you need intermittent time off after return, FMLA can protect you for needing those breaks or appointments too. If your appraisal is connected to attendance, FMLA removes that part from your appraisal. It does expire after a while, so you do have to go back to work. Certifying a medical issue involves getting your provider to fax in a form. It’s very similar to the Leave of Absence documentation most employers ask for. One of my forms was so vague it said “microvascular free flap reconstructive surgery”, so the form didn’t necessarily out me—even though my boss would never get to see it. How soon to file this? Whenever you feel appropriate. I didn’t give more than a month notice, because I didn’t want to receive any incidental discrimination from my company knowing I would be out—this was advice from my union.
Hospital Indemnity – This is a plan offered by some employers at annual benefits enrollment. You can also buy them as an individual or sometimes from your trade group. I pay a monthly insurance premium ($7), and whenever I am in the hospital, I submit documentation and they give me a cash payout per admission and then per day general and per day ICU. They pay me generally $175 – $350 for each day I am in the hospital, so with so much time in the hospital, it’s almost like a substitute salary for those days. Especially in a year when you know you are going to have a lot of surgeries, get this. There’s usually a very specific way you have to submit evidence of admission to the hospital; for example, getting a UB-04 billing document from the hospital in a medical records request. It’s annoying to do all this records requesting, so I request it over fax with a form letter. Mine is offered through Aflac. They do not have any exclusions for pre-existing conditions, and they do not consider why you were in the hospital. There is no copay or anything like that after you pay your monthly premium. They don’t care why you were in the hospital, just that you were in the hospital. I had to wait until I was out of the hospital to do this, since the billing statements and records weren’t immediately available.
Short term disability
Short Term Disability – Usually an employer offered benefit, you can also buy these independently. Most people pay a premium for this, and if you’re out for a month, it kicks in for your pay at a certain percentage. My work is kind of unusual in that we don’t pay in for this. If it is for a catastrophic reason or sudden illness, they just give us a month of pay. We had to submit a form from the doctor certifying that it was serious. My doctor was really good about being super vague so nobody would be creeping all in my records and oogling my transness. I think it said something like “urological medically necessary surgery”. Once I went out on leave, this paid my salary for one month. For most people, this is an outside company, but for me, this is paid by my company.
Accrued sick leave
Accrued Sick Leave – This isn’t an insurance, but it is a benefit that can help you. At my job, unused sick leave rolls over year to year. Luckily, I am frugal with using my sick an personal days, and I had stored up about 20 days, which covered a month of being out at full pay. Score! If your sick leave accrues, consider being out as little as possible in years leading up to surgery. It could pay for your entire leave if you play it right. I was able to overlap my leave with three weeks of paid vacation, so that saved me $3k off lost wages.
Personal legal insurance
Personal Legal Insurance – I always sign up for this and I use it often. My plan is $10 and it gives me unlimited legal advice in person, on the phone, and in email with a huge network of attorneys. It gave me free access to all the power of attorney and end of life paperwork I wanted to have in place before going for a major surgery. There’s no big risk of dying, but I wanted this in place. I also had a number of legal services discounted, ready, and for free if anyone messed with me or my family during this time. My plan was through Hyatt. I also used consultation with Transcend Legal of NYC (trans specialty) for advice about exclusions and caps in my plan multiple times. Every $75 consultation fee was well worth many tens of thousands in access to care.
Long Term Disability
Long Term Disability – Usually an employer offered benefit, you can also buy these independently. They usually offer these at different levels.
Warning: This part is super complicated.You may want to read this slowly if you want this high $$,$$$ benefit. If you don’t have access to this plan, you may want to skip this part for now. I know one person who was in a mess from complications for six months, unable to work, and this saved him.
Warning: Pre-existing conditions apply. You might think, oh, pre-ex are illegal under the Affordable Care Act! As applies to health insurance, yes. Not to disability insurance. There will be a lookback periodof a year or two years prior to whenever you got the plan. If the plan or plan level is new, they will want to know if the condition appeared in the lookback period. They’re not going to look back over all your records for your entire life, but they will look in the year or two years prior to this year to see if you were already experiencing this issue. What you may not know is that preexisting condition lookbacks expire, so if you have the same plan for two years, the second year you have the plan, they don’t care about pre-ex anymore.
I made a point to be extra transparent with my company to let them know that there were two separate medical conditions going on at the same time, so it did not get twisted in any kind of way as if I were trying to scam. I made sure the documentation for my other issue was exceptionally clear and detailed. If you have a provider who does not like working with disability paperwork, you might consider a change to one who is friendly with forms and letters, when needed. I offered additional pay for the time it took to do all of this paperwork, and especially the small practices appreciated the effort to be gracious for their time. Some did not accept the offer, some did, and some asked me to bring the paperwork to an appointment so we could complete it together.
2019 received treatment such as therapy or hormones for condition f64.0, gender dysphoria
2020 bought disability plan from employer for the first time and try to use it for time off for f64.0
The lookback will find f64.0 to be a pre-ex and will not pay
2019 have a disability plan from employer and also receive routine treatment for f64.0
2020 take time off for surgery for f64.0
No lookback or pre-ex applies, and the plan will pay x% of your salary while you are out
2019 received treatment for f64.0
2019 got a newunrelated diagnosis of say carpal tunnel or anxiety which is the reason for leave; overlap care with bottom surgery time off period
The lookback will find f64.0 a pre-ex but will not find the new diagnosis pre-ex and will pay.
*This is tricky to do correctly but is possible and legal. You might want to consult with a trans health specialist attorney in advance, such as Noah Lewis or Charlie Arrowood of Transcend Legal, NYC.Since this is more complex, it may take the insurance a long time and multiple appeals to make sure it is sorted out correctly. You will spend a lot of time making sure they receive all formal medical records properly.
Payout levels This is where it gets tricky. If you want to use the high payout option, you have to have that high payout level the prior year also, or else you will activate a preexisting condition lookback.
2019 have a disability plan that offers 40% of salary after 90 days out; use HRT under f64.0 gender diagnosis
2020 upgrade plan to more expensive 80% after 30 days plan at enrollment; go out for bottom surgery leave
Pre-ex lookback applies to the year prior to enrollment.
The lookback will find f64.0 to be a pre-ex and will only pay for the old plan benefits of 40% after 90 days.
The lookback will find f64.0 to be a pre-ex and will only pay for the old plan benefits of 40% after 90 days.
2020 have same plan; go on leave for surgery under f64.0
No lookback or pre-ex applies since the plan is the same. Plan will pay at 80% starting after 30 days of leave
Important note: Look-backs are usually only one or two years. You could have had an issue five years ago, and if it went away and reemerged just now, that would be a new issue. E.g., If I had depression five years ago which resolved, if it only emerged this year of my new plan, it would not be captured in a pre-ex exclusion.
The stakes for this are very high, because the payouts are potentially quite high. If you are getting 80% of your salary, that means that for someone who makes $50k a year, this will give you $3333 for each month you are out of work recovering. If you hit complications, this can make all the difference in the world. I think it’s very smart to go for it and plan for it. My monthly premium for the high payout is $350 a month—high, but well worth it for me as someone who hit complications with my mental health. I could go out on leave for mental health, make sure all my work and care for mental health was well documented and active, and it is not a problem that I have other care during that time period.
Please do consult candidly and frankly with an attorney about your plan. In this case, I recommend being open and honest, because you do notwant to spend hundreds of dollars a month on a plan that will not pay out. Ask potential companies for a complete policy, as the attorney requests, so you can both go through it to see if it can cover you in the way you need.
If your gender f64.0 would be considered a pre-existing condition, do you have new conditions in need of intense care during the same new plan year?
Disability gap insurance
Disability Gap Insurance — It pays the remaining percent not covered by your long term insurance. I opted not to do this because I wagered the premiums for this would cancel out the benefit. These are a life-saver for people with high risk jobs that are at a likelihood of being disabled for life and need that gap covered. If I were a musician or stenographer and was concerned about the slight risk of dexterity damage in RFF surgery, I might have taken out this additional insurance. I did not, because I also did not want to use an outside company, and I accepted this degree of slight risk. I was starting to feel a little overwhelmed, haha.
Your long term disability plan pays as much as 80% of your salary, highest option. Some people buy gap insurance to pay the remaining 20% if you fall ill or are unable to work.Warning: Pre-ex applies just like for LTD.
My Balance Sheets
Here’s what I got when I was recovering from bottom surgery, instead of the goose egg [goose egg is slang for ZERO]. For my salary at that time:
Gained through plans and packages:
$10,000 for Long Term Disability (three months paid as I stayed out of work for four months getting intensive outpatient mental health care while stage 1 and stage 2 passed)
$4,000 for Hospital Indemnity (and more coming I still need to file for)
$4,200 in Short Term Disability (one month)
$4,200 worth of accrued sick leave (one month) – must have FMLA to be out this long
$9,500 in lost wages (overlapped leave with holiday time and vacation accrual)
$8,000 in two years total of health insurance plan maximum-out-of-pocket costs billed to me via hospital (and they covered $1 MM or roundabout).
$3564 in premiums for LTD and HI (not including personal legal as I always sign up for this; I will continue to pay these premiums but perhaps not at this level going forward)
I do not see many people calculating ways to recoup lost wages due to being out for health reasons. With my insurance plans, my costs were more controlled than they could have been. I acknowledge there are many individual variables that may apply, such as the size of the salary relative to the premium, the cost of the premium, the amount of energy it takes to gather appeals, the amount of time and other conditions you have that make it possible to avoid pre-ex exclusions.
Least sexy, most adulty post ever? Haha yes, and no apologies. Hope this is helpful to someone in making bottom surgery happen!
Disclaimer: I’m not an expert on this, but I did learn enough to share with enough time talking to the attorneys and pouring over plan documents and policies. Please correct me if you spot something that was not phrased correctly or accurately. I am trying to abbreviate some of this, so it may be some of but not the entire picture. I’m in the USA, so this will apply best to this setting. I am not attempting to give legal advice, so please consult a professional if in doubt.
I regret that this advice will not be helpful to people without access to these kinds of employer or private benefits, and it won’t be as helpful to people with extremely tight budgets that cannot wait the extended wait periods for payouts. I acknowledge the many race, class, language, and educational privileges I have that have supported me along the way in my gender transition.