The financial burden of disability

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Conundrum

So following yesterday’s post about my diagnosis, is how this played out financially.

After the initial shock of the diagnosis, the reality set in: we had just bought a house, we were renovating a rental condo, and how were we going to pay for it all? I did know I could cash out all my paid leave, and then I could apply for unemployment but that wouldn’t even cover ¼ of my salary. I got down to business: my financial spreadsheet.

Being a nerd, I knew I had emergency savings and that I could thin our budget down to the bone but long term that wasn’t going to work out. My father had generously offered to loan us some money for the next couple of months and we gratefully took him up on the offer so we could finish out the renovations and get a tenant into the condo. We had so many moving pieces in our lives as we struggled to manage all my doctor’s appointments, the renos, the administrative burden that comes with taking leave, and still try and make our lives as normal for the kids as possible. It was an incredibly trying and exhausting time.

Unlike many people who suffer through a disabling diagnosis, I lucked out: not only were my bosses incredibly supportive and helpful, they had also navigated disabilities of their own and provided me with indispensible advice. Also, like many people who suffer through a disability, my employer had disability insurance that – after a 13-week waiting period – would provide me with 70% of my salary until my disability resolved or I turned 65, whichever came first. I applied right away not knowing what the future held.

Your emergency fund can only take you so far but if you are financially savvy, chances are you have some savings or know that you can reduce your spending down to the bare minimum. You may even look at social security disability (CPP in Canada, or one of the provincial programs) and think you can live off the amount they allocate to people every month. I guarantee you though, you aren’t thinking about the reality of being disabled. So many things that we take for granted as able-bodied people end up being very expensive when you can’t do them anymore. Think of some of the most basic financial advice out there:

Bike to work! Nope, you have to drive, use public transportation, or buy an expensive mobility device.

Buy in bulk! Chances are you can’t carry a 25lb bag of flour from a warehouse store.

Cook your own food from scratch! When you can’t cut food or stand for long periods, you tend to buy more expensive, pre-packaged foods.

Clean your own house/do your own maintenance! Again, if you are disabled chances are you need help with these basic tasks.

That is not even considering how expensive basic mobility equipment is. An electric wheelchair is about $4000. Complementary care professionals such as physiotherapists are expensive. You may need to modify your home, you may need special equipment for day-to-day living. All this, and even going to a simple medical appointment takes way more time than it does for an able-bodied person. For example, in my city ParaTranspo has to be booked well in advance and usually means you are only given a window where you have to wait so it could be up to an hour or more before your ride arrives & then they pick up/drop off other passengers. So an appointment that should have been about one hour can be up to four when you have to use disabled public transport. Being disabled is like a financial and time death by 1000 small cuts. When you calculate all that in, could you still live off social security and still maintain some semblance of a life? It’s do-able but not comfortable, and it certainly isn’t cheap.


Beep, beep, mofos!

Unlike many other people, I was able to apply for private disability insurance, and I was approved as well. Many people find themselves in long battles with their insurer where they are forced to work while the case makes it through the system, which gives the insurance company even more ammunition. A friend of mine who works for the same organization as I do didn’t even realize that we had private disability insurance.

Having said that, there are some other ways to mitigate the costs:

– Provincial/State assistance programs
– Subsidized housing and assisted living
– Subsidized personal support workers
– Federal tax credits (such as the DTC in Canada)
– Provincial/State tax credits
– CPP for dependent children
– Etc.

However, the administrative work that goes into proving your disability costs you both time and money. All the above-mentioned programs also have their own administrative burden and wait times. I can’t imagine what it would be like to have challenges that would make these applications impossible to do without assistance. I find them burdensome for someone who rather enjoys filling out forms. A friend of mine who is a lawyer who is licensed to practice in two countries has told me that she finds them exhausting. Imagine what it is like for the average person.

For my disability insurance I spent hours upon hours filling out forms, cross-checking dates, getting my employer to fill out forms, paying for doctors to fill out forms, faxing and mailing forms, and clarifying my information on the phone. It’s incredibly labour-intensive and draining and you don’t even know that after all that work and all the money you spend if you will be approved. In my case, I was approved but the work is the same either way.

I have mentioned before that no one thinks they are ever going to suffer a disability. But research shows that in the US 1 in 4 20-year-olds will suffer a disability of a year or more in their lifetimes. For me, I have always been super strong and active, so I never thought it could happen to me. It happened to me. It can happen to you. I was 38 when I started exhibiting symptoms and I am 42 now. It doesn’t even necessarily happen when you are old, and in my case there was absolutely nothing I could do to prevent it, so all the lifestyle advice in the world wouldn’t have changed a thing.

If you aren’t disabled and enjoy running numbers, play with the various calculators and costs associated with being disabled. If you are financially independent run the numbers and see how you would fare if you had to spring for a wheelchair and various mobility devices. Sure, you can probably access many credits and supports but if you have to wait for next year’s tax return or go on a waiting list could you weather the financial burden?

No one wants to think of these things just like none of us want to believe we will die some day. However, many of our emergency plans are based on short setbacks that we plan to recover from in less than a few months. If you don’t know what you’d do if you suffered through a long-term, debilitating disease it may be worth the thought exercise to figure out how you will manage.

Next post: forced early retirement vs. choosing early retirement.