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.