ER(E) with a disability

Where are you and where are you going?
recal
Posts: 80
Joined: Sun Nov 14, 2021 12:29 pm

ER(E) with a disability

Post by recal »

Hi there folks, I've lurked on this forum for many months and I decided to start this journal in the hopes that it will be helpful for other people in a similar situation.

Who am I?

I'm a 25 year old in a VHCOL area in the US who was completely disabled for 3 years as I was getting treatment for a degenerative disease. I now have a band-aid situation, where it's working... as long as it works, with regular treatment and surgery every 5 years or so.

A few years ago, when I got out from under the shadow of my disease, I had only one goal -- live a normal life again, and save for the inevitable. I will eventually succumb to full non-functioning disability again and this time, I need to be financially prepared for it.

What's unique about being disabled in regards to ERE?

Several things, actually!

- Need to plan for a huge buffer for future healthcare expenses
- A lot of things people consider to be "luxuries" are not choices for someone with a disability
- A lot of the fundamentals of ERE -- being a renaissance man, for example, are unlikely to occur beyond the big 3
- There's a ticking clock looming in the future which is much more motivating than anything most people can imagine

What will this journal entail?

I will mostly just be covering my financial plans in broad strokes (raw $$). I don't know if anyone is interested in hearing more about specific lifestyle stuff, but I'm happy to share if so.

I mostly want to start this journal for a diverse perspective on this forum. I simply haven't really found much talk about the reality of disability, and I'd like to share and broaden perspectives, as I find a lot of the talk in the general FIRE community tends to be catered towards people who don't have to deal with the reality of disability.

So, I hope if you're reading this, please do respond and feel free to ask me anything, I will only share what people ask me to share!

recal
Posts: 80
Joined: Sun Nov 14, 2021 12:29 pm

Re: ER(E) with a disability

Post by recal »

Current Finances as of June 2021:

Net Worth: $311,052
Spending in May: $3,847
Net Income in May: $8,051

Financial Goals:

My conservative goal is to retire by 40. I am currently 25. Since this is not a guarantee for me, my real goal is to retire as soon as humanly possible, or get as close to retirement as possible before my health makes me unable to work.

Retirement Number: $2,000,000

(This hasn't been adjusted to 2022 inflation, but I'm not sure that the inflation really affected my number much.)

Why this number?

My current spending is around $3,000 a month, or $36,000 a year. By the 4% rule (my most aggressive retirement number), I can retire at $900k. Even using the 3% rule, I can retire at $1.2m. I'm 25-30% there already at the age of 25! Woo! 70% savings rate is rad! Right?

Not so fast. The big difference between my lifestyle and other people's is that I am planning for health. That means I am adding in my ACA plan ($400 a month or so) which is $5,000 a year as of right now, and the out of network out of pocket maximum, around $18,000. This all makes my lifestyle cost $59,000 a year, and for obvious reasons, I'm making that $60,000 a year.

My retirement number goal is $60,000 in income x the 3% rule. That comes out to $2,000,000. This means I'm only about 15% of my way to the goal.

(By the way, depending on how things go, semi-retirement at the $1.2m mark is a goal of mine if I can get away with it. But I'm not sure it's wise considering I don't know when my life will have to stop.)

Most retirement calculators seem to estimate this at somewhere around age 35-40.

Here is a conservative estimate using fixed returns:

Image

Here is a Monte Carlo simulation:

Image

(By the way, the income used in these images is higher than my monthly * 12 because I receive a bonus every year as well. As of 2021, it was about 15% of my base pay.)

That's about it for my financial picture. I'm not sure if it's exciting enough to update any month, but as I said in the intro post, if anyone is curious more about the mindset behind these numbers -- what kind of lifestyle I'm leading, why these numbers, etc.., I'm happy to explain more. I just don't want to delve into details that no one's interested in.

Thanks for reading! I hope this is helpful in some way.
Last edited by recal on Wed Jun 01, 2022 11:40 pm, edited 1 time in total.

UrbanHomesteader
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Joined: Fri Apr 29, 2011 9:02 pm

Re: ER(E) with a disability

Post by UrbanHomesteader »

Thanks for sharing all this. I would be interested in hearing more about your story and lifestyle.

Is the medical care you require fairly easy to get insurance companies to pay out for?

Have you looked into whether Medicaid would cover it if you needed to pull the trigger much earlier than planned (and had income below the Medicaid expansion threshold)?

Would you be open to moving to a lower cost of living area and or receiving medical care abroad?

I know those are common avenues discussed in FIRE circles, and I'm curious what that looks like from your point of view.

AnalyticalEngine
Posts: 949
Joined: Sun Sep 02, 2018 11:57 am

Re: ER(E) with a disability

Post by AnalyticalEngine »

Looking forward to see your journey. It is always insightful to read ERE experience from people with a variety of backgrounds. Navigating the medical system is certain a difficult task, so it is useful to see how you plan for this without full time employment.

recal
Posts: 80
Joined: Sun Nov 14, 2021 12:29 pm

Re: ER(E) with a disability

Post by recal »

I'll address the questions first, then I'll share my story.
UrbanHomesteader wrote:
Wed Jun 01, 2022 2:44 pm
Is the medical care you require fairly easy to get insurance companies to pay out for?

Have you looked into whether Medicaid would cover it if you needed to pull the trigger much earlier than planned (and had income below the Medicaid expansion threshold)?

Would you be open to moving to a lower cost of living area and or receiving medical care abroad?

I know those are common avenues discussed in FIRE circles, and I'm curious what that looks like from your point of view.
The answer to all of these is... kind of.

The way my disease works, there's not very standard treatment. It's more of an art than a science. I wasted years going to an in-network doctor that was incompetent and let my disease fester without getting any good band-aid solutions. They said they'd get the infrastructure for the surgery within the next few years so they kept postponing that. And all the day-to-day medicines were just... Honestly, they were incompetent.

What ended up happening was that they eventually covered the surgery, but I had to pay for the next doctor I went to out of pocket.

Due to these experiences, this year, I decided to move off of my parents' insurance (still an HMO, so to clarify again, no out of network treatment) and I signed up for a PPO (out of network coverage included at a higher cost) for the first time. I'm learning it as I go. I'll know within the next year how well covered these things are, but so far, the $18k estimate is a pretty good ballpark for either paying out of pocket or paying the out-of-network max. It might be too much, in-network out-of-pocket max is about $8k for the ACA plans. This would reduce my income goal to $50k a year.

Either way, I'm nowhere close to near enough for even my bare-minimum retirement, so I'll know enough to answer this as the years go on and I continue to learn to navigate American healthcare as an independent adult. :)

A big worry is also possibly developing another disability -- I'm so young and two major health things have already happened to me and derailed my life, it's really difficult to plan around that dread. The statistics aren't in my favor.

So for getting care abroad, it's not an option because it's more of an ongoing care thing. The surgery itself actually isn't that bad out of pocket ($10-30k depending on the doctor), it's the fact that I want to be within a day of seeing my doctor at any time if things go bad, get worse, or if I need to be functionally disabled for a year or more again while we try to find another day-to-day fix. (Trying different medicines and being carefully monitored to see if it's working well or not.)

For Medicaid and moving to LCOL area, I'll answer that in the following post as I go into my current lifestyle.

recal
Posts: 80
Joined: Sun Nov 14, 2021 12:29 pm

Re: ER(E) with a disability

Post by recal »

Lifestyle, or Why I Probably Intend to Stay in a VHCOL Area

People have very different kinds of disabilities. For mine, it is painful, but in a very specific body area and the rest of my body can remain fit, active, and go on with life.

In ERE terms, this means that I can remain pretty self-reliant and am not planning on depending on a very isolated lifestyle.

The caveat to that, is that my mobility will still be limited. I am currently unable to drive due to this, and I will continue to not be.

Fun fact: When I got my first job, I moved to one of the most affordable areas in the country according to some news articles (average income : average home price), and lived in a downtown yuppie apartment. Due to not having a car, I had to spend over $1000 a month just to get to work.

I work in a white-collar job that has WFH as a possibility post-pandemic, and sure, I could do that to save money, but that's not necessarily the lifestyle I want to live. I remember sobbing in that city because it cost me $60 to go to a proper Indian restaurant with the Uber cost and the food cost and I couldn't afford it. And due to the extreme weather, it wasn't a very outdoorsy place where there's a lot of free and cheap options for seeing other people.

Once I moved to this VHCOL area with a real public transit system and relatively milder weather, mobility was no longer a barrier for remaining social and fit. I actually play a number of sports right now, including cycling, I began volunteering this year, I have a number of friends, and I eat out a couple of times a week. I could spend less on eating out (particularly times I eat out alone), but I spend only a couple hundred dollars a month more here in this area where I pay almost $1000 more in rent than I used to. All this, for what I consider to be a more full, healthy, variety-filled, and social lifestyle.

(I am aware plenty of folks bicycle around in a car-heavy area, but the reasons I can't drive a car are similar to the reasons I can't plan to cycle long-term either. I will replace cycling as a fun hobby with a different... less movement/reaction-oriented sport when that time eventually comes.)

I'd like to remain in a VHCOL area for this reason. I know I can make it work in any big metro city with trains and buses in the the western world for about $36k USD (not including the health stuff, as I mentioned above) and not feel like I'm particularly at a disadvantage as a disabled person. This would be cheaper if I had a partner to share expenses with, but it's not something I'm planning on or actively pursuing, so I'm pretty happy with this lifestyle number. I just feel healthier like this.

Probably a better plan of action is to find some sort of alternative housing situation. The $3k average I spend per month is 50% on rent ($1650 per month). For example, I'd could move slightly less downtown (but still near bus and train stops) and live in an in-law unit, maybe I can swing it for $1200 a month. But, right now saving less than $500 a month just doesn't seem like it's going to make that much of a difference during my peak earning years.
Last edited by recal on Wed Jun 01, 2022 4:26 pm, edited 1 time in total.

Scott 2
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Re: ER(E) with a disability

Post by Scott 2 »

2MM is a big number. I wonder how you could bring that down. There's something to be said for gambling on poverty when you are infirm, for the guaranteed return of spending your healthiest years well.

As your condition gets worse, could you qualify for SSDI, once you've earned the 40 work credits? Outside of any benefit amount, that would eventually qualify you for medicare, which could make the healthcare costs more affordable.

Alternatively - have you looked into the ACA subsidies and healthcare plans with cost sharing? If you can thread the income needle and find a plan with good doctors in network, your medical costs could be far less than you are projecting.

Does your condition impact lifespan? A 3% rule is reasonable for someone on a 50+ year time horizon. If your time horizon is shorter, maybe a 4% or even 5% rule would be more appropriate.

recal
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Re: ER(E) with a disability

Post by recal »

Scott 2 wrote:
Wed Jun 01, 2022 4:23 pm
2MM is a big number. I wonder how you could bring that down. There's something to be said for gambling on poverty when you are infirm, for the guaranteed return of spending your healthiest years well.

As your condition gets worse, could you qualify for SSDI, once you've earned the 40 work credits? Outside of any benefit amount, that would eventually qualify you for medicare, which could make the healthcare costs more affordable.

Alternatively - have you looked into the ACA subsidies and healthcare plans with cost sharing? If you can thread the income needle and find a plan with good doctors in network, your medical costs could be far less than you are projecting.

Does your condition impact lifespan? A 3% rule is reasonable for someone on a 50+ year time horizon. If your time horizon is shorter, maybe a 4% or even 5% rule would be more appropriate.
Absolutely agree on the first part. Honestly, I think the big gap between my lifestyle vs. the cushion I feel I need for health reasons could make a difference of 10 years of extra working. At the rate that I'm saving, I could reach about $900k by the time I'm 30. That covers my bare lifestyle. I've considered doing a semi-retirement then. Get a part-time job (or freelance, I work in a highly paid field) just enough to cover healthcare and my current lifestyle. Don't touch the principal for 10-20 years like that (if I can) and wait for it to grow to a point at which I'm comfortable. It's terrifying, but the alternative -- that I could spend all my healthy years working 9-5 is equally terrifying! I'm not sure how viable this is.

I'm not confident I'll be able to qualify for SSDI. It's tough to prove. It's possible. It depends on how bad it gets. Ideally I'd be happily retired before that happens, so it's not part of this conservative calculation, but it sure does support the semi-retirement idea -- live while I'm young and I can live... Figure out tomorrow when it comes (and with $1m in the bank, which is a million times better than most people suddenly find themselves disabled with).

ACA subsidies are possible, but they'd only affect the premiums. It'd reduce a $400/m premium to $150/m, that'd save $3k a year, it's not a huge difference in the end when I'm planning for the possibility of hitting out of pocket max. (Or paying out of pocket entirely if I don't find any skilled doctors.)

And no, my condition doesn't affect lifespan, luckily. I will still have a full life I'm looking forward to. Two of my grandparents are still alive and are 90 and 92 right this moment. :) That's great, but also, yeah, I'm betting on the possibility of living a very long time.

I think this leaves two options. In the end, I'm more conservative than average because returning to work if things go wrong, work-housing arrangements, etc.. that a lot of people keep as back-up options are going to be very difficult for me. That won't budge. Spending less won't make a huge difference either since the healthcare cushion I'm aiming for is such a huge percentage of my spending, $100 here and $100 there won't make a very significant difference and probably isn't worth it for me considering these are my healthy years I'm trying to indulge and be hedonistic.

For the big 3: I have no car, I live in a modest, yet very enjoyable studio apartment, and my food bills are reasonable enough by my standards, although not as efficient as they could be if I spent more time on them and went more out of my way.

This has me taking the semi-retirement more seriously now... Maybe I can get away with it, after all?

EDIT: Just checked the SSDI site, even with earnings coming from my stocks.

Image

Any benefit receipt from SSDI does give you access to Medicare.

Again, my big concern with this would still be doctor access... I'm confident Medicare wouldn't qualify me to access to great doctors who understand the disease is more of an art than a science. Chronic illness is really an area where money can make a huge difference in the outcome of your life.

UrbanHomesteader
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Re: ER(E) with a disability

Post by UrbanHomesteader »

Thanks for the detailed response.

It sounds like you are making good choices for yourself and looking out for ways to improve.

Scott 2
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Re: ER(E) with a disability

Post by Scott 2 »

I'm interested to see where your path goes. Your strike me as an intelligent person, well equipped to navigate the waters.


A few more thoughts:


SSDI does not count unearned income, like investments. When you are paying into social security, the disability coverage is part of what you buy. It's effectively a government funded long term disability policy. Your investment returns would not reduce the benefit. Should your condition escalate to the point where you qualify, by definition you probably wouldn't exceed the earnings ceiling. Obviously not a path to root for, but the worst case scenario may not be as financially ruinous as it first seems.

There's definitely something to be said for earning enough work credits per year, to keep the policy active. In 2022, you only need to earn $1,510 to earn a quarter's work credit. The test is 20 work credits over the past 10 years - so just 2 quarters per year.

Like you've said, not all doctors are available via Medicare. It's hard to predict how things will look when you are of Medicare age. Current recommendation for my parent's generation, is Medicare original plus Part G and Part D supplements. That provides nationwide access to the vast majority of doctors. Costs run the insured around $4k per year. The doctor network is much better than any insurance policy I can buy.


I'd note - What you spend is not your income. When the time comes to live off your portfolio, you have a lot of control over how much income is realized. As a simple example - spending your cash savings clearly is not income. Selling an investment? Only the capital gains count. This makes hitting tax advantageous income levels easier than it first appears.

If you can figure out how to thread the income needle, ACA coverage can be much better than a reduced premium. We're keeping our income below 2x poverty level this year. My in-network deductible is $200. My in-network max out of pocket is $2900. I am using the crap out of my insurance this year, expecting in future years, I might opt for a higher income, where medical care is then expensive.

Out of network costs are still what you stated, but by buying the nicest silver plan available on the exchange, I've had a reasonably broad pool in-network doctors.

Cost sharing is what makes this work:

https://www.healthinsurance.org/obamaca ... subsidies/

recal
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Re: ER(E) with a disability

Post by recal »

Wow @Scott 2, thank you so much. This is extremely eye opening information.

I never tried inputting in values that were lower than my cost of living. So, I put in $28k at first, and I got a Silver plan (HMO, PPO, they were similar) for about $100 a month, but the out of pocket maxed at $6k. I put in $20k, and boom, $50 premiums and a sub-$3k out of pocket. That's a huge difference. Apparently as a single-earner, this kicks in at incomes less than $30,578.

On the other hand, if it's forced SSDI-esque retirement, then I can get Medicare with the paid premiums. SSDI may not apply if I'm not forced out, since it requires you to have worked 5 of the last 10 years. I'd rather bet on the cost of living adjustments, but keeping this in mind.

I see how buying property can also be advantageous to this plan, something I put completely off the table due to how ridiculous housing costs are in VHCOL areas. Immediately chopping housing costs from $1650 to $500 or so a month would reduce my spending to $24k a year could pay for itself in reduced necessary income alone. I'm not too interested in owning a home (goes back to the mobility issue with my disability), but I'll keep it in the back of my mind as an option.

There's two different paths here: Forced retirement from my health turning to the worst before I can officially retire (I will be sad if this is the case, but I'm saving for this!), or getting to retirement and being able to handle my health's degeneration when the inevitable happens. Hopefully after a long and interesting post-retirement.

I need to formulate a new plan with this information, this is the biggest change in my plan in years. Initial thoughts: Aim for $40k a year income rather than $60k, plus a normal cash buffer for a year or two of living, plus a $100k bonds buffer for out-of-pocket costs (this covers band-aid solutions for several years, if anything worse happens, well, that's why I want out of network insurance even if the out-of-pocket max is always $20k a year). That's still a lot of money saved in a very conservative ways, but it's hundreds of thousands less than I was initially aiming for.

Again, thank you for this. Posting here on a whim today may be the best thing I decided to do in a while. :D

recal
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Re: ER(E) with a disability

Post by recal »

I found a very interesting thread today on the forum. viewtopic.php?t=12281

I particularly found this post (quoted within the thread, from another thread) very interesting (and feels very typical, mindset-wise).
First congrats. Secondly, If I read another contrived argument about healthcare being the obstacle to retirement I'm gonna scream. MMM and other FIRE sites are fear mongering health care to push a political agenda, that's it. Here are the scenarios you fear:

1)Urgent onset of emergency medical need. Acute injury like an accident, emergency surgery, heart attack. A high cost deductible plan or healthshare can be had for less than $100 a month to cover this. It'll cost to you, maybe a 5-7K deductible plus any follow up care you chose to take.

2)Cancer or similar. This is in it's own class because it can be semi-chronic (ie requiring several months of acute treatment and a few years of follow up) or chronic. Generally chronic cancers falls into my last two categorie below and are often fatal. Options for the semi-chronic are two fold. Since treatment is generally not an emergency, you can use medical tourism to cuts costs to 1/10th the horror stories you read in the US. Or you can pick up an ACA policy. Remember, all you have to do to qualify mid-year is move. So, worst case here is that you are not set up to max subsidies and you have to pay for a gold-plated silver plan out of pocket for a few months, plus the deductible. Again, we are talking in the thousands, not hundreds of thousands to get you through the acute phase of treatment.

3)Lifestyle related chronic diseases. This is the vast majority of health care spending in the US. So, prevention, prevention, prevention! Do not life the lifestyle that causes these diseases! ie retire for god's sake! If you fall into this category you are stuck in the traditional healthcare system and will need ACA or employer sponsored plan. Also chronic disease sucks, see below. Edit: FYI this is where the majority of the "$2000 a month, for the rest of your life" medications are needed.

4)Random, non lifestyle related chronic disease. OK, this is a problem, because there is little you can do to hedge against this. Luckily, it is also rather rare for this to develop after early adulthood, and prior to old age and medicare. Here I will tell you that anyone who gets sick like this is not super worried about money. Long term illness sucks, it sucks really, really bad. Virtually anyone suffering will tell you they would trade all of their money just to be healthy again. So if you are fated for this, for gods sake, please live your life exactly how you want before it happens! You will not regret it.

tl;dr: Yes healthcare in the US sucks, it's complicated and requires significant effort and brain power to navigate on the cheap. However, even as it is today, it's completely navigable by a currently healthy ERE'er with some slack in their system.
So, I specifically have a #4 disease. My reality is not like this. I need money... I would trade all my money to be healthy again, but I still need money to do that. A follow up comment within the thread:
RealPerson wrote:
Wed Feb 09, 2022 11:22 pm
In the case of a "random" chronic serious illness, the most cost effective approach I see is medical tourism. You could simply move to Mexico and enjoy cheap everything, including health care. If you are opposed to moving to Mexico, moving to a spot close to the border with Mexico is a viable alternative. There is a town in AZ full of medical semi-tourists/retirees who cross the border to go receive care in the adjacent Mexican town. It is a 20 minute drive. Very doable even if frequent medical care is required. You are very anchored in Michigan but with the severity of your health problems AZ could be a really good and cost effective solution. Try to modify the parameters of the system in case there are no good solutions in the existing system.

In the US health care system your situation really sucks. Looking across the border strikes me as a much better option. You should make a trip to check it out before committing to a move. Hablar Español ayuda pero so es necesario.
I find that this mindset seems to be particularly prevalent amongst people who are able-bodied, or who have illnesses which are lifestyle-related. This is because the numbers of people with say... heart disease... are innumerably large compared to my disease (and the extremity of my disease), which I was diagnosed with at 17.

There's this idea that healthcare is a pretty standardized solution and different doctors don't act in extremely different ways in response to various illnesses.

I have family in a country that a lot of people consider for medical tourism, wealthy family, and when a patriarch got cancer, did they get treated in that country? No. They came to the US, rented a house here, etc.., all to get to one of the best doctors in the world. Whenever I've visited my surgeon, an hour drive from where I grew up, I'd hear a cacophony of languages, it sounded like people from around the world had come to see him. The US, UK, and some other expensive countries genuinely have the best doctors and hospitals in the world if you have a rare disease.

I'm not sure what I'm trying to get at here, but I guess since this is my journal, my intention is to shed a light on what I feel is a common view within this community, which is a shame because I feel like ERE/leanFIRE is the safest path forward for someone in my situation (of which there are millions in the US), but it's difficult to get any coherent information.

It leans in both directions: Live like it's your last abled day, because any day might be that. But also, people like you should never quit your job because of how expensive your healthcare is!!

I think some of the replies in this thread helped me find a middle ground within that, and I'll post about that in the next post. But, maybe I should start adding more about how a disabled person thinks about the systems-thinking presented in ERE. It's a good framework, but just because I am in the rare minority who can't do a lot of basic recommendations people have for systems-thinking (which Jacob presents on his blog, not necessarily so much in the book), doesn't mean that the thinking can't apply... with caveats.

I'll start drafting out some things, hopefully it's interesting to people. But, it's going to take a lot to distill my thoughts on this, so it will take more time than this initial flurry of improvised posts.

Some initial thoughts on things I can discuss:

- My view on health maintenance as someone with a disability
- Day-to-day lifestyle and priorities balancing money-earning with the variance of how my health decides to be that day
- What my goals tend to be with such a day-to-day variance in lifestyle

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jennypenny
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Re: ER(E) with a disability

Post by jennypenny »

There are people on the forum with random chronic illnesses, including some who don't consider medical tourism an acceptable option (I agree with you about quality of care issues). There are states where you might qualify for different kinds of assistance (welfare, medicaid) based on your condition alone. DS automatically qualifies in our state. He plans to work wherever he chooses when he's finished with school but acknowledges he'll probably move back here if work becomes too difficult for him. He also knows he has to live near large centers that treat his condition, both for quality of care and likelihood of accepting medicaid for insurance.

You have to strike a balance between income, access to care, and access to insurance. Try to avoid hard and fast rules and take everyone's suggestions as intended -- they may be more informed than you think. I'd suggest you start looking into state assistance programs to come up with a list of potential states with decent assistance programs combined with high quality care for your illness. DS's illness has a foundation with a lot of this kind of information. Maybe there is something similar for your illness.

Good luck.

recal
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Re: ER(E) with a disability

Post by recal »

jennypenny wrote:
Thu Jun 02, 2022 3:55 pm
There are people on the forum with random chronic illnesses, including some who don't consider medical tourism an acceptable option (I agree with you about quality of care issues). There are states where you might qualify for different kinds of assistance (welfare, medicaid) based on your condition alone. DS automatically qualifies in our state. He plans to work wherever he chooses when he's finished with school but acknowledges he'll probably move back here if work becomes too difficult for him. He also knows he has to live near large centers that treat his condition, both for quality of care and likelihood of accepting medicaid for insurance.

You have to strike a balance between income, access to care, and access to insurance. Try to avoid hard and fast rules and take everyone's suggestions as intended -- they may be more informed than you think. I'd suggest you start looking into state assistance programs to come up with a list of potential states with decent assistance programs combined with high quality care for your illness. DS's illness has a foundation with a lot of this kind of information. Maybe there is something similar for your illness.

Good luck.
I appreciate your response! It's good to hear I'm not alone in this situation.

I currently don't qualify for assistance because since it's a degenerative disease. I am currently considered able-bodied since the band-aid treatments are keeping me steady. The goal is to retire before the degeneration gets too far so I can fully enjoy my remaining youth.

But yes, I'm very adamant on staying in a VHCOL area because of these things -- access to care and generous state laws around how both the ACA and the Medicare system are established.

What I'm primarily worried about is the possibility that I could continue to need care into my 60s but never qualify for disability (unlikely, but possible). I will still need regular non-preventable high-quality healthcare year after year.

It's still a long way away financially, and I'll have to keep my eye on how the yearly cost is as I accumulate more. I just know I'll never be quite as lean as people on this forum seem to be. Even with a lowered SWR + a large cash buffer, it's multitudes more than I have saved right now, so we'll see.

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jennypenny
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Re: ER(E) with a disability

Post by jennypenny »

recal wrote:
Thu Jun 02, 2022 4:18 pm
I currently don't qualify for assistance because since it's a degenerative disease.
Are you sure about this? Have you checked every state? I was very surprised at what qualified for assistance even if the person isn't technically disabled. States are very different in their approach to at-risk cases in this regard.

recal
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Re: ER(E) with a disability

Post by recal »

jennypenny wrote:
Thu Jun 02, 2022 4:25 pm
Are you sure about this? Have you checked every state? I was very surprised at what qualified for assistance even if the person isn't technically disabled. States are very different in their approach to at-risk cases in this regard.
I haven't, but I'm pretty sure. Let me do a double check in the forum for my disease.

Preliminarily, it looks like all the results from my search are showing up as the disease is not relevant in this case.

Particularly because a transplant is possible, there's a lot of very expensive avenues for treatment long before the degeneration will get bad enough to qualify for disability. So, for the 3 years in which I was completely non-functional and I was getting treatment to try and find avenues for band-aid solutions, I wouldn't even qualify for disability because I hadn't exhausted all the avenues yet, according to what folks on this forum are saying.

It is definitely the kind of thing where working every day is painful and is actively contributing to my degeneration, but man, the unknowns are unknown. Let me see if I can zero in on that instead...

From the page on understanding the costs of my disease:
Research has shown that people living with X could be expected to pay more than $25,000 for cost of care over their lifetime post-diagnosis.[1] One survey even found that 46% of patients pay more than $1,000 annually for treatment costs.
I'd estimate $3k in ongoing costs per year for me -- honestly, with or without insurance. Then, there's the $20-30k surgery every 5 years (gets covered by more and more insurance every year, but I'd like to be able to pay out of pocket if necessary for a great surgeon). The transplant would cost $60k, and would obviously be a one-time thing.

This is the first time I've really thought about this... These are all of the treatment options, none are enough to bankrupt me out of pocket, honestly. Maybe it's not that bad after all, despite the lack of disability acknowledgment.

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Ego
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Re: ER(E) with a disability

Post by Ego »

Interesting. I figured out from the quote that it is the same disease I was diagnosed when I was in my early 30s. I am now 54.

I was fortunate to be diagnosed by accident in Malaysia when I was at the doctor for something related but different. The ethnic Chinese Malaysian doctor was skeptical of the American approach and told me so in no uncertain terms. She gave me very different advice than what I got later that year from a doctor in the U.S. Alarm bells were clanging in my head when the U.S. doctor gave me a brochure on the condition produced by the company that manufactures the treatment.

I decided to follow the Malaysian doctor's advice to watch and wait. When it wasn't a problem for a few years I just stopped worrying about it. The last checkup in 2020 was the first with a new doctor. I did not tell her I had been diagnosed to see if she noticed. She didn't. Also, the standard measurement that would indicate a problem actually improved.

Obviously different people have different experiences with this disease. Please don't think I am belittling your experience. I am certainly not. Especially considering that you cannot drive a car. But I would be interested to learn if your inability to drive is the result of the disease itself or if it occurred after a particular treatment.

recal
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Re: ER(E) with a disability

Post by recal »

Ego wrote:
Thu Jun 02, 2022 7:33 pm
Interesting. I figured out from the quote that it is the same disease I was diagnosed when I was in my early 30s. I am now 54.

I was fortunate to be diagnosed by accident in Malaysia when I was at the doctor for something related but different. The ethnic Chinese Malaysian doctor was skeptical of the American approach and told me so in no uncertain terms. She gave me very different advice than what I got later that year from a doctor in the U.S. Alarm bells were clanging in my head when the U.S. doctor gave me a brochure on the condition produced by the company that manufactures the treatment.

I decided to follow the Malaysian doctor's advice to watch and wait. When it wasn't a problem for a few years I just stopped worrying about it. The last checkup in 2020 was the first with a new doctor. I did not tell her I had been diagnosed to see if she noticed. She didn't. Also, the standard measurement that would indicate a problem actually improved.

Obviously different people have different experiences with this disease. Please don't think I am belittling your experience. I am certainly not. Especially considering that you cannot drive a car. But I would be interested to learn if your inability to drive is the result of the disease itself or if it occurred after a particular treatment.
Yep, it happened before the treatment. I suspect that the reason why yours didn't develop so rapidly (or possibly at all) is the age. I was diagnosed at 17, and the earlier people are showing symptoms, the more rapid the development is. There's also just different extremities of the disease like many chronic illnesses, and I've hovered the line between moderate to advanced since I got it.

For the three years post-realizing what was happening, I was entirely non-functional and could barely leave my room. It devolved fast into extreme pain. Surgery and treatment saved my life and are the only reason I was able to become financially independent (from my parents, I mean, who weren't willing to accommodate to the major lifestyle changes I went through).

I drove before the diagnosis, I tried to drive after the surgery (even took driving lessons again), and couldn't do it. The big kick in the ass I got in this past year is that although I adjusted my lifestyle around all of this, I started to feel like I was going insane because it was fluctuating a lot day to day. Lo and behold, when I went for my yearly checkup, my doctor sat down and had a grave chat with me about how it's getting worse again (5 years after my first surgery). I could feel it, and I could see the charts.

Anyway, I'm hesitant to share the details more widely because unless you know what I'm talking about... people tend to have a certain impression of the wider disfunction the disease that's difficult to shape. If you know, then you know, but if you don't, it's difficult to explain.

So, functionally:

- Driving-style mobility is limited
- White-collar work is a pretty painful experience for me
- Sports are fine and this shouldn't have any effect on other chronic diseases apart from the high stress of living with this

Retirement in a VHCOL area would simply be the easiest way to reduce exposure to pain / actual triggers for the disease progression points.

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Jean
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Location: Switzterland

Re: ER(E) with a disability

Post by Jean »

have you thought about switzerland? healthcare is excellent(and cheaper) and it's one of the easiest place to live in withour a car or a bike.

recal
Posts: 80
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Re: ER(E) with a disability

Post by recal »

Jean wrote:
Fri Jun 03, 2022 10:34 am
have you thought about switzerland? healthcare is excellent(and cheaper) and it's one of the easiest place to live in withour a car or a bike.
That's a possibility (along with other big European cities, namely London, since it also has some great private doctors). Switzerland is still very expensive, though!

Even if I don't stay where I'm living right now forever, my initial number ($36-40k per year) will cover the COL in any very high cost area in the world. I don't know which I'll end up in yet, but I know I'll be able to financially handle it.

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