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The unbearable weight of bureaucracy

The unbearable weight of bureaucracy

Yesterday, a friend of mine came over so I could help her work on her own disability application. I don’t want to discuss her medical concerns here but I feel that she was rejected for very poor reasons so she is currently working on contesting the decision. I sent her home with my personal forms in the hopes that they would be helpful with wording.

Four years ago, I retired permanently on LTD (vs. the STD I had been on for the 2 years prior)

Unfortunately, the barrier to many things is bureaucracy. We have a joke in our family that I am the queen of cutting through red tape. I can stay on the phone for hours, hold music is my favourite jam. The reality is that for most folks, this is an absolute nightmare. Trying to manage everything from subscriptions to telecommunications companies to (the worst of the worst) insurance companies is so daunting for folks that I don’t blame them for putting it off.

One of my most brilliant friends got so overwhelmed during her partner’s treatment that they just paid the bills rather than fight with health insurance (they are in the US). It’s a sad fact that when you are the least able to manage the stress of dealing with an administration is when you require those skills the most. They are also lucky in the fact that the company has an entire department dedicated to managing health insurance claims on behalf of the employees because they recognized that it was cheaper to pay an entire department to do the work of waiting on the phone and writing email than it was to pay their top performers/earners to do it themselves. That is how much time and energy this busy-work entails: you need to add an extra layer of bureaucracy to get what you are essentially paying a fortune for.

On the flip side, you are also paying for companies to add an extra layer of bureaucracy in terms of hiring what is the equivalent of human firewalls to essentially deny claims all day. This has been studied and often if you have the time and energy to fight the insurance companies you will often win. Now AI is involved in claim denials, so that’s a fun layer of complexity. Who doesn’t LOVE the idea that our financial stability and credit rating are at the whims of computers?

Back to my friend who was denied. She has been on this journey for over a year. She has had referral after referral and has some real, physical issues that can be seen in tests. She was still denied because unfortunately, you need to have the right people at the helm filling out forms and you need to be detailed but succinct. Long essays about emotional stress doesn’t hold as much weight as point form facts. Here is a (non-exhaustive) list of things to keep in mind when you are filling out forms for a disability claim:

Don’t wait: get to work right away with tests, keep the dates and the names of who you have seen. Have a clear path showing that you are working on getting a diagnosis and improving your health.

Keep a personal record of your symptoms, the list of drugs you are taking and the tests you have had: unfortunately, you will constantly be asked about your symptoms by a variety of different health care workers. I found it easier to just keep all this information in a word document and add to it as I went along. If you have a symptom that just started to happen, make sure you note the month and year. Inevitably, when you are repeating the same information over-and-over again you will find you may forget some pertinent details. I have been told by professionals that they appreciated that I printed it all out for them so they could just copy the info they needed into their records.

Before you apply for LTD either have a diagnosis or have a clear path to getting one: when you are suffering through a health crisis the weight can make you feel like curling up on the couch and just wasting the days away. Please don’t do this. Be as engaged as possible with the process. You will be required to prove that you are doing due diligence in improving your symptoms.

Learn the lingo: it’s fasciculations, not “twitches.” It’s spasticity not “tight muscles”. When writing about your symptoms, try and use medical terminology so that you look informed.

Focus on what you can’t do, not what you can: we all want to feel capable and want to highlight the ways in which we are able to overcome adversity. But the insurance system (private or state funded) is designed to focus on what you can’t do, not what you can do. The way you word things matters! I have a friend who works for the agency that manages the provincial disability system (ODSP) and I asked him once for advice and he said the biggest thing people do wrong is that they word things in a way that makes it seem like they are mostly functional.
GOOD: I can’t get out of bed some days. I cannot button my shirt without assistance some days.
BAD: I can get out of bed most days. I can button my shirt most days.

If possible, have a specialist fill out the forms: a GP/Family Doctor does not carry the same weight as a neurologist or oncologist. Get as much concrete info as possible, and by concrete I mean actual tests that show there is something wrong with you. Above all, focus on what can be seen or what you can prove. An MRI report holds way more weight than a list of symptoms. Videos also can help without just relying on your say-so.

Which brings me to the worst one…
Sadly, no one cares about mental health: I know this is going to sting but please try and keep in mind that unless you have seen active duty and have PTSD, mental health challenges are notoriously difficult to prove. Only one person I know has ever received LTD was severely bi-polar and it had affected the workplace so severely AND they had to become an in-patient at a mental health facility to get it. You may be able to use STD to go off for a period of time with anxiety and depression but at least where I live I haven’t heard of anyone getting permanent LTD for it.

I know absolutely how anxiety and depression play a huge role in physical health as well and if I ruled the world things would be different. But I haven’t heard of anyone crafting an application with a huge mental health component winning a case.

Keep in mind that the people who review your case see thousands a week: be factual, be clear, don’t use flowery language, don’t talk about your feelings too much unless it is directly related (ie: a medication known to cause emotional turbulence), check your spelling/grammar, type vs. handwritten. Above all, remember that it’s not an essay, it’s a description of your symptoms/abilities/limitations/diagnosis.

In the end, it is up to you to prove that you have a sustained, long-term disability that prevents you from performing the necessities of life. Here are a few resources for Canadians that they may find helpful:

The CPP-D information and application: even if you are on a provincial or private disability benefit that would knock your CPP-D benefit to $0, if you have worked in the past it pays to apply anyway. To be on CPP-D means that it “stops the clock” on the years required for regular CPP benefits when you turn 65. If you have children, you also get a monthly amount for them as well.

Disability Tax Credit: this gives you a non-refundable tax credit for $9428 (2024).

The Registered Disability Savings Plan: this is worth it for everyone who received the DTC. Even if you don’t put a penny in, the government will put money in for you (you must get the DTC to get an RDSP).

The CPP Disability Channel: it hasn’t been recently updated but the info is still great.

The Resolute Legal Disability forums: this is an amazing searchable archive where you can get answers – or ask questions – to almost anything disability claim-related from private to public claims as well as government programs.

It is imperative that you do due diligence in exploring the programs and services available to you. I have private health insurance benefits but there are programs to help people in my province who may not be on ODSP but who have high prescription drug costs or who require mobility aids. It never hurts to spend a day seeking out any services or assistance in your community such as Meals on Wheels who not only service the elderly, but the disabled as well (temporary or permanently). There are myriad resources available to people at the city, provincial and federal level.

What is luxury?

What is luxury?

But it is pretty, I will give it that

I just got back from a week at the Royalton Punta Cana in a Diamond Club swim-up room. It was to be our last HURRAH trip as a family. The Eldest goes into grade 11 next year, The Youngest starts high school and Mr. Tucker wants to retire so we figured we would have one last blow-out before settling down for a bit. We splurged & paid quite a lot for the trip and it was…mediocre. If I was to be completely honest, I felt like it was a huge bait-and-switch and was not as advertised. But what I really want to discuss is the elusive concept of luxury and why I tend to upgrade as much as I can afford to when I travel. But it’s not truly luxury for me: the idea of paying a luxury price is to overcome barriers for disabled people.

If you asked my kids or anyone from Gen-Z what their definition of luxury is, they would probably list off a bunch of things that they’ve seen on TikTok: private airplanes, certain fashion brands, sports cars, large homes and (for some strange reason) fancy ice. When you are young you tend to think of THINGS as luxury because you tend to have few things and not a lot of money. But as a woman of a certain age I do have enough things and I also have enough money. So, if I had to define luxury right now in relation to my own life, it would be: the ability to minimalize friction by throwing money at a problem*.

Over the years, my idea of a good vacation slowly changed. I used to camp with my own equipment in my 20s. By the time I had kids in my 30s and had small kids, it was all about Glamping, then we started renting rustic cabins, and today I won’t rent a cottage that doesn’t have a certain level of amenities. When I was young I had mobility and a high tolerance for friction but no money. As I got older, that reversed course. In my 20s, I would have told you that there would be no way you would ever catch me dead lying on a Caribbean beach somewhere doing nothing. As far as I was concerned, travel was about seeing and experiencing things, about culture and history, about new food and drink! It was about backpacking and hostelling and $15 CAD Ryanair flights and sometimes just taking off for the weekend to Montreal with 20 bucks in my pocket and a floor to crash on. The adventures made the stories and honestly, I was able to do a lot of very cool things for not a lot of money. I was very proud of this fact and so completely convinced that this was the ONLY way to travel and experience the world. No pre-planned tours or packaged vacations for me, thankyouverymuch, I am here to live like a local!**

As you age and/or lose mobility the amount you are willing to pay to smooth over the friction that eats up your time and patience increases. Now that I have money but less mobility***, I use it to try grind off the edges of how user-hostile things have become. Keeping with the theme of travel, here are a few things I have done to minimize friction:

– The entire family has Nexxus/Global Entry cards.
– I have a credit card that gives me free luggage, insurance and other travel perks.
– I upgrade my airplane seats and use the priority line.
– Because I have a scooter to gate check, I always arrive early (and yes, there is always a problem).
– I have upgraded to the ship-within-a-ship cruise concept to minimize waiting for anything and to ensure I always have a large suite, an accessible seat at the theatre, that I am not left standing outside waiting for anything, that I get reservations for everything I want to do and to get special requests actioned quickly.
– I get private transport when possible because a bus transport may – or may not – be accessible for me and it’s a very difficult thing to know in advance because most people don’t know the difference between a step I can manage on a bus and one I cannot.

I know people will read this and think, “oh boo hoo, a luxury experience wasn’t good enough!” But it is more about being sold one thing and getting a completely different experience. I pay for the extras because walking is difficult, getting up is difficult, managing a buffet with a scooter is super difficult so instead I pay to reduce these things. My idea of luxury, again, is to smooth out the rough edges of an experience, or, put another way: I pay for upgrades just to have a similar experience to what an able-bodied person gets at a base tier.

What I found with this last trip though is that we spent a fortune on a “luxury” experience (swim out room! Turn down service! Butler! Priority reservations!) and got closer to a budget experience (pool is disgusting and full of detritus! Mold and must in the AC! No towels! Room looks like it was shot up in a war! Only resos are at 7:30pm!). I suspect that it has something to do with revenge travel that still looks to be going strong. I follow some travel folks on social media who are saying that deals on cruises aren’t really happening because they are finding their itineraries booked solid. What makes for less incentives for sales also makes for less incentives for customer service, too. I suspect that it what happened with our trip: the resort has no incentive to deliver on their promises because for every customer who is dissatisfied, there are 10 more lined up to pay for a garbage experience.

In the end, we feel completely scammed but if I was to takeaway a positive from this experience, it is this: it confirmed our decision to stay put until the kids are out of high school. When we got home last week I had never been so grateful to fall asleep in my own bed. Coming home, in fact, must be the most luxurious experience of them all.

*I want this on my tombstone.

** We love the myth of the “authentic travel experience,” even though it doesn’t actually exist. We pooh pooh the idea of all-inclusive resorts and cruises (or even hotels, really) as culturally bereft even though the idea that you can have a genuine “authentic” experience has been debunked in multiple articles such as this one and that one. But as I’ve aged I have come to appreciate the pre-packaged, they-come-they-spend-they-leave vacation as something that can be good for the soul, if only because a change of location is good for the mind.

*** The poverty rate for people disabilities is twice as high than for people who do not have disabilities. In 2021, 16.5% of people with disabilities lived in poverty, representing more than 1.5 million people. This is compared to compared to 8.6% of people without disabilities,” (source). Being disabled is incredibly expensive as well. So not only do you make less money you also have to spend more on just the day-to-day costs of living.

On scams and fear of starving in retirement

On scams and fear of starving in retirement

John Oliver is amazing and it is the reason why HBO hasn’t canned him, despite the fact he stirs up a lot of legal drama. He does to a lot of great public service segments and most are well worth watching. Here is a show he recently did on pig butchering scams:

Now, this is an important PSA for everyone because I think that a> yes, we – and by “we” I mean “everybody,” including me – are prone to getting scammed; b> we have no idea how far the rabbit hole goes with organized crime getting in on it; and c> how important it is to come forward and tell people about how easy it is to get scammed. It’s incredibly embarrassing to admit that it has happened to you but it is so important to let others know. Forewarned is forearmed, after all!

But I think what struck me in the comments section were people who said, “Can you imagine having enough money in the first place that you could lose $350,000!” followed by, “Interesting to see this comment!! I was like “wow, I can barely afford my rent, no savings for a rainy day and they’re losing more money than I can save in 4 lifetimes!!”

I automatically juxtaposed these comments to the hysterical headlines of “CANADIANS BELIEVE THAT YOU NEED OVER ONE MILLION DOLLARS TO RETIRE*” that has plagued Canadian media in the past year. This lead to a bunch of rebuttals including from one of Canada’s most adorable couples who retired early(ish) with “only” $300 000 in the bank.

The reality is that even though people are supposed to save for retirement, most of them don’t. Many people just live on the average amount of government benefits. So I thought it would be interesting if I calculated it up for a person who made minimum wage their entire lives but who worked until they were 65. This is both for the Canada Pension Plan (which we pay into) and Old Age Security (which is welfare for old people**).

They would get a total of $17658/pa or $1471.50 a month.

Since that number is under the $21624/pa cutoff for a single person for the Guaranteed Income Supplement, a single person working a minimum wage job could get up to $1065.47 on top of that CPP/OAS amount, bringing the grand total to $2536.97 a month or 30443.64/pa. It’s not a lavish lifestyle but it is definitely manageable, especially if you have some paid off real estate, social or co-op housing, live in a low-COLA area or have a bunch of roommates.

If you somehow also managed to save in a TFSA – let’s say, $100 000 total over your lifetime – you could probably also take out 4% tax free during your retirement that would also give you an extra $4000 a year that wouldn’t affect your benefits at all. Again, not a high-on-the-hog lifestyle but manageable.

OH? You don’t think someone who makes minimum wage could save $100000 over 30 years? I mean maybe not…but also it would only mean saving $1380 OR $115 a month in a TFSA at a 5% interest rate, which is not out of the realm of possibility, either.

We all know that this is over a long time span and programs come/go/and get cut by governments all of the time & the future is unknowable. While we tend towards the catastrophic, things can also get better if you are a good saver and/or make more money over your lifetime. They can also get worse if, say, you were a stay-at-home spouse with someone who died and left you nothing***. I think focusing on what you can control, today, is better than letting the panic freeze you into inaction or living your life in fear.

Naturally, this is all just a thought experiment. I am sure you could nitpick this example to death**** but it is an example of one particular scenario out of many and it’s just to show people that all is not lost if you don’t have a million dollars in the bank. I feel that it is counterproductive to push the ZOMG IF YOU DO NOT HAVE A MILLION DOLLARS YOU WILL HAVE TO EAT CAT FOOD narrative in a province where we seem to be ok with Welfare being $733 and Disability (ODSP) just $1308 a month.

Don’t let the bastards get you down.

*Depending on your demographic, according to this BMO survey.
**This is exactly what OAS and GIS are as it comes out of the current federal budget. If you want to watch your old, curmudgeonly uncle lose his goddamn mind at Thanksgiving, tell him that he is actually on welfare and stand back and watch the sparks fly!
****I put in 1975 as the birth year but the TFSA has only been around since 2009, par example.

Just keep on keeping on

Just keep on keeping on

What I’m reading
Vanguard’s guide to retirement withdrawal strategies.

[E]very conversation takes place on two levels. The official conversation is represented by the words we are saying on whatever topic we are talking about. The actual conversations occur amid the ebb and flow of emotions that get transmitted as we talk. With every comment I am showing you respect or disrespect, making you feel a little safer or a little more threatened. The Essential Skills of Being Human.

Deep thoughts
When the kids came home last night the first thing they both said when they walked in the door (1/2 hour apart) is, “You’re dressed! What’s going on!?” UGH. I need to get out more. In my defense, it’s been a lot of bedrest for medical reasons and once that was done, Mr. Tucker had condo stuff to do in his spare time so all personal stuff was de-prioritized as we ended up in survival mode. But it’s time.

Still, I want my kids to remember having an active mother who go out as much as she could despite disability. In general, I feel like I am way more active than a lot of other disabled folks. Some it’s due to the severity of their disability and for some it’s just plain giving up. If I was a researcher I would study the health trajectories/outcomes of people who had a positive, life-affirming attitude and those who give up once they’re diagnosed. I am happy to offer support, kind words and resources to people going through a rough time – sometimes you just need to complain to other people who understand what you are going through. But I’ve had to block individuals in online PLS groups because they were posting constantly about how awful they felt and how they can’t do anything and how all of their friends don’t want to hang out with them. It was a constant barrage of pity-party posts and it just exhausted me and brought me down. I think perhaps these people should reflect on whether or not it was disability that turned people off or if it was the constant complaining?

But truth be told, while I have experienced some of that, most of my good friendships got stronger after I was diagnosed. Sure, some people will always fall by the wayside but it’s difficult to tease out how much of that is just a natural progression in friendship and what is an inability to manage someone’s diagnosis. I keep showing up for them and in turn they keep showing up for me.

But back to last night’s astute observation by my kids. If I’m honest, pre-pandemic I went to the gym 3-5 days a week, did dragon boat, walked or biked around the neighbourhood more and did physiotherapy twice a week. Since then, I haven’t been back to my usual activity levels and my return to dragon boat was thwarted by my broken foot followed by a huge pelvic surgery (that went a bit sideways). It feels like since we have been back post-pandemic with some regularity, it’s been one thing after another. Having said that, I am determined to change that even as we head into winter. I think I have been focusing too much on what I can’t do and not really focusing on what I can. In other words, while I am not whinging about it on facebook, I am falling into the same trap of the people who constantly complain. I need to show up for me.

Next weekend is pretty social with games night and heading out for dinner with friends on Friday night. The following weekend is book club. These things remind me that I am still doing things but I am just not back up to the level I once was. I plan to change that.

What I’m up to
Mr. Tucker is at the condo today as the appliances have been delivered. He sent me a picture and they look FANTASTIC! He also replaced the vent covers, replaced the shower curtainrod and now he’s putting the doors back on and measuring a few things. The last things we need to do are: fix the window, install the microwave, replace the bathroom fixture and replace a curtain on the closet.

It finally feels like we are in the home stretch and are almost ready to put it on the market!

Oh, and as for last night: we went out to buy paint for the room switch! The Eldest is moving into the office downstairs and Mr. Tucker is moving the office upstairs. He plans to do most of the painting next weekend as it is American Thanksgiving and it’s super slow at work. That will leave him energy to paint at night. Then on the weekend, we will move her stuff downstairs. Damn, it will be good to be able to have a shared office again. I have a desk tucked into a corner of the living room and quite frankly – it sucks.

Since we’ve also used almost none of our pocket money this month, afterwards we treated the kids to dinner. It was a pretty lovely evening and it felt good to be out.

Bon Vindredi à tous!

On the dark unfairness of life

On the dark unfairness of life

(instead of A Jot A Day, you get this)

The Wheel of Fortune

When I first let people know my diagnosis, I had a very morbid thought: some of the people who were responding to me with kind messages of support may actually die before me. They may also become disabled. They may also have their lives rocked by an untreatable illness or major accident.

Of course, that prediction has come true. But I wasn’t particularly prescient: the wheel of fortune goes up and the wheel of fortune goes down. Whether or not you are a pauper or a king, death comes for us all.

Thankfully our brains are really good at shielding us from the inevitable. Most healthy adults don’t walk around constantly worrying about death. But when tragedy strikes it comes to the forefront of all of our minds and we are confronted by the reality that life is profoundly unfair.

We think that we will stave off the reaper by eating well, exercising, and practicing mindfulness. We take vitamins, get enough sleep and drink a lot of water. We hope that it is enough so that we can live a long, healthy life. Indeed, it is definitely the smart thing to do for sure: a healthy lifestyle is a great way to extend what Dr. Peter Attia calls “healthspan.” We all should definitely be doing as many right things as possible. But as much as we believe in the Just World Hypothesis – that the world is fair and we will be either punished or rewarded for our behaviour – it’s just not true. The universe is a random, chaotic place full of unknowns.

We can do all of the right things and hedge our bets thinking we will come out ahead – or at least come out even. But the house ALWAYS wins.

I don’t know if I mentioned it but Mr. Tucker is adopted. Because the universe seems to have a sense of humour, I actually went to high school with two of his biological sisters. Having them in our life feels natural even though we haven’t been able to spend a lot of time together since covid. They are very special, wonderful people.

Unfortunately, one of his sisters has a 25-year-old son who is very sick with an incredibly rare type of cancer. Although he has done all the right things, it has been abundantly clear that he is in his final days. It is profoundly unfair that this should happen to someone so young. He has two younger sisters who are still under 18 and the entire family is just in crisis right now. I cannot think of a more profoundly horrific experience as a mother than to watch your child slowly die…and there is nothing you can do.

My mother always used to say two things, “don’t wish your life away,” for when someone is impatient for the future and “old age is a luxury afforded to too few,” for when someone complains about the aging process. I feel these two things profoundly today as I think of them all at the hospital, eking out what last moments they can steal from death.

Life isn’t fair. We know it as a platitude and we know it as a truth. We pretend it is because it protects our mental health and allows us to go forward and live our lives. It gives us a sense of agency that we know intellectually we do not have. “When your times up, your time’s up” is another one of my mother’s favourite sayings. For some people it scares them: stay inside! Don’t take risks! Don’t endanger your life or security! For others that saying invokes the opposite response: go outside! Take as many risks as you can! Live life to the fullest!

For most of us, life is lived in the in-between spaces. The moments we steal between work and responsibility. The moments we get with our family and friends, to work on our hobbies or to do the activities we enjoy. The risks we take or don’t take depending on our temperaments, our financial situations and where we live and work. If I have one defining poem that I keep coming back to since my diagnosis it is Mary Oliver’s, The Summer Day:

The Summer Day
Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean–
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down —
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don’t know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel in the grass,
how to be idle and blessed, how to stroll through the fields
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn’t everything die at last, and too soon?
Tell me, what is it you plan to do
With your one wild and precious life?

– Mary Oliver

Tell me, what is it you plan to do, with your one wild and precious life?