Planning for FIRE with pediatric cancer

[jjcbjs]

My husband and I are in our early 40s and have two kids 12 and 9. We have long been grinding through intense careers that we both would like to leave. We are also pretty risk-averse and have trouble planning a life outside a 9-5 world. But we have been making progress, saving, and starting to think through what FIRE or just more flexible work would look like.

A sticking point when I think about leaving my job particularly is healthcare. My employer provides amazing, free healthcare for our family with a $100 deductible. In the past this has been nice to have, but we have all been pretty healthy and it hasn't been that important. However, this spring we were hit with the worst-case health scenarios when our 12-year-old was suddenly diagnosed with stage 4 cancer. The best news is that he is responding to treatment and is expected to make a full recovery. The financial good news is that our insurance has worked like it should. We are at $500k in claims over the last 2.5 months and we have paid $100. Everything is getting easily approved and covered. We imagine those costs will double before treatment is over and we will still only pay that $100 deductible.

It has been a whirlwind few months as we go through this. Now that my son is responding to treatment I have hope and can think a little of the future. I have two opposite reactions:

1) Life is short! I want to optimize flexibility and time with my family and leave the grind.

2) The US medical system is scary and overwhelming. I want to keep all the security and benefits that I can for my family and ensure we have good health coverage. My risk-averse nature kicks in and I will never leave my job and current benefits.

I am on a leave of absence currently. I know that I will go back after my leave and stay for at least ~2 years. I am hoping that I can figure out a plan for a more flexible path after that. My husband's job also has decent health insurance but I would like to find a path that also allows him to do something else.

I think this means that I need to research and really get comfortable with insurance options on the exchange for when we FIRE. I don't need insurance that is equal to what we have but do want to feel secure that we will be covered for any ongoing health costs after this cancer and for any other unforeseen health emergencies. This has really opened my eyes to how quickly healthcare costs can add up and I feel grateful that in our current situation we aren't spending time/energy battling with insurance to get things covered. I hear horror stories about medical bills in these situations and I don't want to give up my insurance until I am comfortable in alternate coverage.

How can I get smart? What are the resources that I can look at to really understand health insurance options for FIRE?

[Morning Glory]

I am sorry you are going through this. I've never experienced anything so harrowing first hand. I'm glad your son is recovering.

I wish I could answer your insurance question. I'm trying to figure it out too.

[reeshau]

I, too, am finding it difficult to put together a response: you have a lot on the line, and it is so much more serious than the typical money or lifestyle question.  I'm sorry this has happened to you and your family, and applaud the positive post you have made, and that you are seeking to take action!

I would presume you are headed for an ACA plan; the experience with that depends very much on the state you are in, and how much they have supported or resisted its implementation.  But at a minimum, the national ACA site, healthcare.gov, can let you browse what's available for your state and also check for plans that cover your current medical team.  From my own experience having first signed up last year, be prepared to find that no plan will cover everything as-is.  While we have nothing as serious as your situation, we do have some chronic conditions and found that our preferred specialist in one area was not covered by any ACA carrier, at any price tier.

In a broader sense, the Kaiser Family Foundation has a lot of information on the performance and development of healthcare, inside and outside the ACA.  They may be a good reading source for background information.

Thinking of alternatives, is there a less stressful position with your current employer, that wouldnmake working until your son is an adult a better fit?  Or, possibly, would your skills translate into a position at one of the medical providers you are using, which likely has good coverage?

[Morning Glory]

Thinking of alternatives, is there a less stressful position with your current employer, that would make working until your son is an adult a better fit?  Or, possibly, would your skills translate into a position at one of the medical providers you are using, which likely has good coverage?

FIRE might be better in that she would have more time to spend with her kiddo. I watched a coworker go through this and run out of disability and PTO and FMLA and have to work when her son was getting chemo or in the hospital with infections. She couldn't afford to lose her job because she was the one who carried insurance for the family. It was awful. Not something I would wish on anyone. Coincidentally, she was working for the medical provider who was able to provide the best care for her son. They have rules that you can't call in more than so many times per year or you lose your job (real fun during flu season smh).

My kids are looking like they might have ongoing therapy needs, although thankfully not for anything life-threatening.  I'm just learning about ACA plans and deciding which state to move to when I FIRE.  The premiums look like something I can afford, however the deductibles are much higher than what I'm used to!!  I'm starting to look at some states where they have a Medicaid buy in for kids because the income thresholds for those are much higher than our annual spend.

[yachi]

It's awesome that your 12 year old is responding to treatment and expected to make a full recovery!  My nephew was diagnosed with Leukemia around that age, and it was a long battle.  It was very emotional, as the prognosis was not always good, and his treatment and recovery from treatment took a long time.  His cancer has been in remission for maybe 9 years.  He still has some lingering issues.  I don't know all the details of his family's insurance, but it could only have been what was available on the exchanges, or under CHIP.  Most of his care was covered by a charity that the local hospital works alongside, so our extended family is quite grateful for that and we always support their fundraising efforts.

I see you're looking to work another 2 years.  Something that I didn't realize could be done was to actually go to healthcare.gov and go through all the links to sign up for insurance: put in your children's ages, your smoking status, and your income.  Then you can actually see how much your tax credits will be and different plans will cost you.  For our FIRE budget, I found a plan that we would like, and I include the monthly premium after ACA credits, and spending the entire Out of Pocket Maximum each year.

[la Condessa]

My condolences.  I’m so glad your son is responding well to treatment.  Our son was diagnosed with cancer in November, and it is quite the roller coaster ride.

My son’s cancer is one that they don’t expect to ever be gone, just controlled.  So maybe this would be different for your family, but here’s my thoughts.  I’ve put ideas of RE on the back burner for now, and am just trying to increase our family’s financial resiliency.  But if we get to the point where retirement is an option, we will need to budget enough for retirement that we can cover the maximum out-of-pocket costs every year for the insurance available to us in retirement.

Alternatively, I could calculate our money needs in retirement as our annual expenses plus a lump sum to cover that oop maximum for several years, planning on coming out of retirement if he were to need that entire sum for several years in a row.

Depending on requirements to qualify for Medicaid in your state, your son might qualify for Medicaid without your income.  Medicaid can be a pain about covering many treatments without a fight, but I have found it makes a great combination with private high-deductible insurance.  Our private insurance has a $15,600 family deductible, and a $15,600 out-of-pocket maximum.  It will cover without problem a number of things that Medicaid will automatically deny.  But together, Medicaid pays for more basic things up until the deductible/oop maximum is met, then private insurance covers everything else.  So besides medical travel, our costs have been those of the treatments that Medicaid won’t cover that come up early enough in the year that our deductible to not be met yet.

The costs of cancer can be huge, but I say, if you can swing it, go ahead and retire early.  Enjoy every moment you can get with your family whenever you have the chance.

[reeshau]

One further item to be aware of:

One provision of the ACA was to eliminate annual and lifetime maximums from health insurance policies.  If the ACA is struck down in its entirety by the current Supreme Court challenge, this provision would go with it.  Here is a quick summary of the changes the ACA brought, which you can view today as those things it is delivering today, and would be threatened similarly by it being struck down.

https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-health-insurance/health-insurance-laws/the-health-care-law.html

[20957]

You could poke around your area and see what kind of part-time jobs with healthcare are available. If you are working until your youngest is 11 anyway, you and husband could each work part-time for 4 years to get them to adulthood.  I know some people teach a class or two at the local community college, for instance. Not FIRE obviously but might hit the spot.

I'm glad to hear that the prognosis is good!

[LightStache]

As a solopreneur I've already had to deal with this question. Ultimately I decided on a marketplace plan -- Bronze PPO HDHP --after crunching the numbers. I do avoid going to the doc now because I don't want to pay the deductible, so I'll admit maybe Bronze HDHP wasn't the best choice, but that's a bit off topic.

There aren't really a ton of choices out there. They are 1) marketplace plans, 2) non-marketplace plans, 3) health share, 4) foreign/expat health insurance, 5) Medicaid, and 6) VA. You can find out all the details about each just by researching online. For me the marketplace plans had the best cost-benefit analysis by far. I'll continually reassess. The cost-benefits will likely change as I age and it could change sooner if the ACA is modified, but I don't think marketplace plans will just disappear.

After some recent experience fighting for denied claims and research I did about the various options, I don't find the system "scary and overwhelming" as OP put it. (The system definitely has room for improvement though!) OP I'm so happy that your son is responding to treatment and that you have affordable access to care. Don't let scary news stories impact your FIRE decision making. Do your research, focus on the facts, and I'm confident you'll find a solution to work into your FIRE strategy.

[ElleFiji]

I'm not American, but I'm active in disability PF communities, and I see a popular option is to barista FIRE. In the literal sense, it means that Starbucks offers benefits, but I think that you can research different part time jobs with good benefits

[CindyBS]

jjcbjs

Hello - fellow cancer mom here striving towards FIRE.  First, I am so sorry you are going through this and send internet ((hugs)).

My son was diagnosed with an aggressive subtype of leukemia at age 13, bone marrow transplant age 14, now cancer free, 18 and graduating HS.  We had started to plan to FIRE before his diagnosis, and will retire in a couple years - a few years later than hoped but still happening.

Sounds like you are still in frontline treatment, am I right?  My suggestion is to wait until he is in maintenance to make any big moves.  You will have a lot more clarity and know your son's needs going forward and are right to be concerned about the costs. My son has had about $3Million in medical expenses since diagnoses ($1M was transplant).  Unfortunately, it is pretty likely your son will need something.  Whatever health plan you get, you are going to want to make sure that mental health counseling is included in the plan as there will most likely be a need for it - possibly for your whole family.

An option to think about that may be available in your state is when your son is 18, he may qualify for Medicaid separate from your income.  I've heard of parents doing this where their insurance is the first insurance, and Medicaid is the secondary insurer - meaning Medicaid pays your out of pocket deductible for your son. 

We have a High Deductible Health Plan (HDHP) and a HSA, this ended up being cheaper than the next lower plan available at my husband's work if you are going to max out the deductible.  The one nice thing about the cancer is you know you will max out your deductible each year, probably within a month or 2.  Definitely look into a HSA if you haven't.  One strategy we've used is that we piggyback the paying of our yearly deductible with opening a credit card with a sign up bonus that has a minimum spend of several thousand dollars in a few months.  So we get the sign up bonus and then typically 1.5% or similar as cash back reward.   Not a huge savings, but it does typically knock several hundred dollars off.

Also, document every medical expense paid out of pocket.  Every time you pay to park, all your mileage to/from he hospital, etc.  We went to another city for a second opinion and were able to  deduct our hotel costs from the HSA.  I'm not sure how far you can go back with an HSA, but if you ever do get an HSA, it is nice to have a stack of receipts you can reimburse yourself with any time - whether you need the money now or just sit on them while your HSA grows.

A final aspect to consider is you may not want to stop working in some capacity.  You are supposed to grow apart gradually from your child as they grow and become more independent.  Cancer throws that all out whack, especially with teens.  They get sick, become very dependent like a baby or toddler, then get better and suddenly aren't dependent - it is not gradual.  For me is was pretty disorienting as a parent, and one thing that really helped me get over our situation was going back to work.  When I went back it was very renewing to not just be "My son's" mom and having something going on in my life that wasn't cancer and going to the hospital all the time.  It has really helped me in developing a post cancer life again.

Hang in there and good luck.