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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.

Stop selling us out!

Stop selling us out!

A few times a year people will send me a link to a “mobility device” that is actually not an accepted mobility device at all. In the “about us” section there is a quote about why the owner designed it and the reason was: the person she designed it for didn’t want to “look disabled” by using approved mobility devices such as walkers and scooters.

The TL;DR of this is: you are disabled and should feel badly about looking so uncool! Here, buy my overpriced contraption that isn’t approved by any authority at all so you look a little less uncool!

I feel the same about mobility devices that I feel about the way words change over time to become pejoratives, so we keep having to change them. If people would just stop shaming others by, say, calling them the R word, using the R word would have never become problematic. I am sure intellectually and/or developmentally disabled will eventually lose some cultural runway as we turn those terms negative as well*.

But at the crux of both of these issues is this: we are “othering” people for getting old and/or losing mobility. But we fail to see that we are the problem for not normalizing getting older or becoming disabled. Given that over a quarter of the population will become at least temporarily disabled in their lifetimes, you would think it would be more accepted. For me, I feel that because I became disabled at a younger age I had less of an issue transitioning to mobility devices. But christ on a cracker: are old people ok? They get BIG MAD at even the suggestion that they aren’t young anymore and it drives me bonkers. It also seems to be a mostly Boomer issue**, judging by our parents. My FIL fell out of a tree and lay in the backyard for hours because he still insists on doing his own yardwork and my dad still gets up on his roof to remove the snow. It’s absolutely ridiculous – oh and they are both still doing it.

But time to grab an apple juice and sit cross-cross-apple-sauce on the classroom carpet (or any other accessible space that makes you feel comfy!) because it is storytime, kids!

On our recent trip to the Dominican Republic I experienced this phenomenon first hand with the world’s most irritating, entitled Boomer couples I have ever had the displeasure of encountering. So to fair Verona…I mean, Punta Cana… where we lay our scene, I will draw your attention to the following:

Instead of having a bunch of seats at the gate they had more of a security line set up where you wind around until you get to the front. As someone with a mobility device, I had a few questions. You see, at the Punta Cana airport they have a bus to take you to the tarmac so I needed to speak to the gate check clerk and see if the busses had ramps*** and what the protocol would be. This is standard protocol when you are disabled: you better get to the airport early and you better confirm time-and-time again what the process will be because chances are someone with argue/disagree and many phone calls and elaborate discussions with staff will ensue. So I went around the line to speak with the gate clerk. She told me that they did have ramps, I could get on with my scooter just fine, and then she told me to wait up front to ensure I got on the bus first before they let everyone else on. So I waited beside the counter, like I was told.

When I travel with my family, I make my kids stand so that other people can sit down. But since many people don’t realize that they live in a world with people who cannot, say, stand on a moving bus, I make my kids sit in seats and as soon as I see an elderly person or a person with limited mobility get on, I make my kids move. So as people started to pile onto the bus, I noticed an older couple coming towards us when all of the seats were full. I motioned to them to come, my kids got up and the couple was grateful for the seats.

As this was happening, I realized that a voice behind me was increasing in pitch and ferocity. It was something about it “not fair that we don’t get seats!” and “he has bad knees and I have just had a hip operation!” They had loaded from the back of the bus and my scooter was facing the front so I just didn’t see them get on. I guess one person gave her their seat because she seems to have calmed down at that point. We rode off towards the tarmac.

Once we boarded the plane, I realized that the Boomer couple were in the first row, kitty-corner, in front of me (I was in 2C). I then remembered that we had the exact seating arrangement on the way there and that I had just not noticed the couple because they were assigned seats 1E and 1 F. Seats 1A, B, C, and D were assigned to a lovely family with the parents being in the aisle seats. I suspect that the wife wasn’t a good flyer because I had noticed that they held hands across the aisle on the way there when the flight was taking off and landing.

On the way back I noticed that the Boomer husband was loudly…booming. He was complaining about his knees and how he needed more room and how awful it was that the aisle seat had been already booked when they got their seats! He was speaking generally in his wife’s direction but clearly this shame-enducing diatribe was intended for the seats around them. Then of course – gaining no tracking for his passive-aggressive moaning – he started in on the Dad in the aisle seat with his complaints. Eventually the Dad offered to switch seats with the Booming Boomer and that led to the incredibly forced, “Gosh, are you sure?! It’s just to hard on me with my knees! Wow, you are so great for offering!” Like this guy really had a choice! He then proceeded to tell every single person who lined up for the bathroom in the aisle beside him about his and his wife’s personal medical history and how it was so difficult to travel without an aisle seat. Over. And over. And over again. The entire flight. For his pièce de résistance he said, “Lady, don’t get old! I am telling you, it’s really hard to go through all of this and not being able to do things like you used to!”

My dude, I am RIGHT HERE. You watched me get on the plane.

But this brings up an important point that I alluded to at the beginning of this post: old people are constantly throwing disabled people under the bus and they either don’t realize or don’t care. Probably both since they don’t see themselves as old (not really) or as a disabled despite their clear lack of mobility.

Firstly, growing old is a gift that is often denied to many. Instead of the constant complaining, sir, practice some GD gratitude. If you’d like, I can hook you up to some perspective in form of a woman diagnosed with ALS who has four small children under 8-years-old if this is difficult for you. This isn’t to say that it isn’t ok for you to mourn the loss of your youth and mobility. Of course we are all entitled to navigate the emotionality of change! But screaming your own personal issues to every stranger within 10 feet is rude and selfish. What I did find fascinating was that he targeted mostly older women who felt that they had to be “nice” to him. No one younger than 50 gave him the time of day for his incessant whining. They just nodded and turned their heads to look in a different direction while they waited for the rest room. Instead of getting the hint, he just spoke louder to anyone who made the mistake of making eye contact with him.

Secondly, if you want accommodation, ASK FOR ACCOMODATION. Don’t wait until you are lined up to get on the flight to whine about disabled people going first or other people booking the seats that you wanted. Airlines (and other businesses) will accommodate you if you ask but if you refuse to see yourself as a person who requires accommodation then that is a YOU problem that you are making everyone else’s problem at the very last second. Not only does that mean that airlines (and other businesses) won’t allow for more accessible availability, it also means that you are throwing disabled people under the bus by pretending that there are more able-bodied people than there actually are.

When I make a restaurant reservation I ask for low seating or booth seating, I make sure we won’t be seated in a place where there are stairs, I make sure there are first floor, accessible bathrooms. Is it a pain in the ass? YES. But the alternative is showing up and having to make the staff panic and force other people from their tables just so I can be accommodated. When I buy tickets for an event I make sure to contact the box office in case there are SURPRISE stairs. I never go to General Admission shows or open seating because I need a seat and I need it to be accessible. I just can’t take a chance that when I get there, there won’t be seats I can get to. Most people consider “only one step” as accessible in their minds and for many people it isn’t. For me, it’s important to know if there is a railing. It’s absolutely exhausting but if I want to have any semblance of a life, the legwork is part of that.

When I first was diagnosed a woman I know who is a physiotherapist said, “Man, if you were only older, I could hook you up with so many resources!” The reality is that between 18-65 most resources for disabled people are incredibly sparse. But there are a TON of resources for seniors to help with a variety of home maintenance/chores to social clubs and events. But they don’t access these services and I have even had one elderly person tell me that they don’t want to, “hang out with old people.” LAIRD TUNDERIN’ JAYZUS: you are old people!

I guess what it comes down to is that if you are struggling with a disability or need an accommodation – whether it is visible or invisible, temporary or permanent – please ask for the assistance. Please use the provided services. Please do not suffer through it and pretend that it is ok to make anyone who needs support to go without it. Not only will it make your life easier but it also paves the way for people who also need accommodations in the future to be able to get them. No one will think you are a hero for struggling up a flight of stairs dragging a broken leg behind you but you will certainly be a hero for paving the way by letting businesses and organizations know that have good access protocols in place makes sense. The key is to not just open a door and leave it open, but to install a door opener for those that need it… and to make sure it works.

* “Concepts, not words are in charge. Give a concept a new name and the name becomes coloured by the concept the concept does not become freshened by the name.” – Steven Pinker, The Language Instinct

**I know it’s du rigeur to shit on Boomers but they really don’t accept that they need to slow down.

***When we got to the DR in the first place they didn’t bring my scooter to the gate and I ended up being forced into a wheelchair. I had to scream at the guy to stop because he was trying to whisk me away but my family was still on the plane. Because he didn’t speak English the flight attendant had to get involved and it was a whole THING that didn’t need to be a THING had they just brought my scooter like they were supposed to. They ended up losing it, which is not shocking if you have ever traveled as a disabled person. On the way back, I was allowed to use my scooter until the gate.