It could happen to you - It did happen to me

I am a 48-year-old single male Canadian taxpayer with no dependants, residing in Toronto, and was diagnosed with a chronic health condition in 2015.

I come from a financially modest background and I have no family in Ontario. My only family, my mother and brother live in NS, from where I immigrated to Toronto in 1990 in search of employment and opportunity. I have lived in the GTA Toronto-Danforth riding cumulatively for over 15 years. I love my home, which I rent, and particularly the area and community in which I live. My doctor, pharmacist, bank and other amenities are all within several blocks. I had a life-changing event.

I was diagnosed with progressive polyneuropathy and somatic pain syndrome in the summer of 2015 after a long, slow progression of the condition. This condition in my case causes among other symptoms, constant severe wide-spread pain throughout my body, ataxic gate and mobility issues. As a result, I now live with a disability and walk with a cane. My condition will not get better, in fact it has gotten and will continue to get worse. It is a progressive, degenerative condition of the nervous system. I started the application process for ODSP (Ontario Disability Support Program) near the end of 2015. I was told I had ‘too much money’ to qualify for support due to some very modest investments I had made in good faith and best intentions some time ago while doing ‘the right thing’ and planning for the future.

I first started experiencing symptoms of my condition in 2011. At the end of 2012, due to my worsening symptoms, I had to make the very difficult decision to walk away from a senior management position in a well-established career in the market research industry spanning over two decades, along with a very respectable salary. I had only been employed by my most recent employer for a relatively short period of time, therefore did not qualify for LTD through workplace insurance. My previous employer I was with for over 16 years. Had I not made the fateful choice to leave there to pursue another opportunity, I would have been covered by the previous employer’s workplace insurance.

After leaving work, I spent the subsequent 2 years seeking a diagnosis; seeing multiple specialists, technologists, undergoing multiple tests, etc. and was not getting any clear answers. Many doctors were baffled as to the root cause of my symptoms. Fast forward to July 2015 when my condition eventually worsened to the point that I called 911 myself. I could barely walk or take care of myself, was in considerable pain/discomfort, under-nourished and severely dehydrated. Frankly, I thought I was going through renal failure or some other fatal event. On my second visit to emergency, I was finally admitted to hospital where I stayed for ~6 weeks, underwent extensive tests (spinal tap, nerve biopsy, MRI's, ECG’s, EMG’s extensive blood work, etc.) and finally received the aforementioned diagnosis. I was then transferred to a rehab facility where I spent another 3.5 weeks undergoing physiotherapy, etc. Having been blessed with relatively good health my entire life up until that point, it was quite an eye-opener indeed to see the cracks, flaws and strains first-hand, within our underfunded public health care system, but that’s another issue altogether.

After leaving work at the beginning of 2013, I lived off my own life savings; ~$100K in savings and investments, with no outside financial assistance. Once my life savings were all but gone (along with my dream of ever being a homeowner) I was in need of financial assistance. I was later horrified being introduced to what I discovered to be a very broken and antiquated system known as the Ontario Disability Support Program (Act, 1997). I was told that I didn’t qualify for assistance because I still had ‘too much money’. After watching my entire hard-earned life savings all but disappear, I had remaining, two modest investments including an RRSP worth ~$XXXX and a non-refundable GIC worth ~$XXXX which was to mature in Aug 2017. I was an open book to ODSP in terms of my financial records and medical history.

Aside from those two small investments, I had ~$8K in savings, and shrinking. This is all the money that I had left in the world in order to keep my home which I happen to rent (and for which I paid out of my own pocket to have safety grab bars installed in the shower), to pay utilities, buy food, etc. In order to qualify for ODSP, I was told that one could not have more than $5K in the bank. I couldn’t remember the last time I had less than $5K and now I was being told that I wasn’t allowed to have any more than $5K? Living in Toronto today, that’s a mere 2-3 months away from homelessness at best!

It was then that I learned that a person with a disability isn’t allowed to have their own financial safety net. I was literally facing eviction and/or homelessness in a matter of months and ODSP was telling me that I had too much money? One can own a home and a car, both obviously substantial investments/assets and still qualify for ODSP, but renting an apartment and having more than $5K in the bank disqualifies one? How does this make sense? (Albeit anyone owning a home on ODSP likely won’t remain a homeowner for very long).

I asked my ODSP intake worker and several politicians if this seemingly arbitrary limit of $5K had been adjusted since the ODSP Act was introduced in 1997? No one could answer me because no one knew (or seemingly cared). In 1997 my rent was nearly half what it is now. Does having $5K in the bank suddenly make a person rich? I can see if maybe someone had $50K or $100K in the bank for instance, which I once had, and spent supporting myself while seeking a diagnosis, staying optimistic and thinking I was going to get better. I have since learned and accepted that I am not going to get better, and have been told that my condition, if it changes, will only worsen. My life is now forever changed for the worse. I was (and still am) trying to hang onto a shred of what I once had and I was being told I had ‘too much money’. What I had/have is relatively a mere pittance. Meanwhile there’s constant, almost daily reports in the media about government waste and fiscal/financial mismanagement. ‘Too much money’ indeed.

In order to qualify for the ODSP, I had to liquidate my modest investments so that I could transfer them into an RDSP (Registered Disability Savings Plan), which I had just learned about and was told that now this was ‘the right thing to do’. ODSP does not consider funds in an RDSP as part of their qualification process and once funds are contributed to an RDSP, it is locked-in for 10 years minimum.

• In order to liquidate my GIC before maturity, I had to forfeit the interest that had accrued; several hundred dollars.

• In order to transfer my RRSP into an RDSP, that too first had to be liquidated, incurring a 20% withholding tax. Why an RRSP can’t be seamlessly transferred into an RDSP is beyond me.

Ergo, it cost me well over a thousand dollars in lost interest and tax withholdings to qualify for ODSP, which does not provide adequate money to live on. ODSP only provides me with ~$1400 per month (including special diet and medical travel allowances), about a quarter of what I once earned. My rent alone is $965, not including hydro, phone, internet, food etc. Why can’t one have a modest financial safety net and still qualify so that one can ‘bridge the gap’ between ODSP and the real world, and potentially stay in one’s home for a year or so longer than one would otherwise? Is this the spirit in which the ODSP Act was intended? To deny benefits to someone with a disability because they have a few thousand dollars invested?

Trying to obtain affordable/subsidized housing in Toronto is, from my experience, a joke. I applied to ‘Housing Connections’, which maintains the centralized waiting list for subsidized housing in Ontario. I’ve never dealt with a less transparent, apathetic bureaucracy in my life. When I called to check on the status of my application I was basically told ‘don’t call us, we’ll call you’ and that for a single male with no dependents, I’ll be waiting at least 10 years regardless. If/when I lose my apartment, I’ll be on the street and will be even more of a burden on the system. From my understanding, the city issues ‘portable’ housing allowances from time to time, as funding permits, which can provide between $200-$500 per month towards one’s rent. However, from my experience they are discretionarily targeted towards a specific demographic; the last two issued, which I found out about via a third party, were targeted towards mothers leaving domestic abuse and seniors, respectively. Single males with a disability and no dependents are always at the bottom of the list.

I couldn’t and still can’t help but feel as though I’m being penalized for trying to do the right things in life, work hard and save for the future. Meanwhile if I had done everything wrong in life, was bankrupt and carried massive debt, then I would more easily have qualified for ODSP. It doesn’t matter that I worked hard my entire life and tried to do the right things. I’m being treated exactly the same way, regardless of my work history and the years I have paid into the system. Many people share the same view that ODSP is a broken, antiquated system. In conversations I’ve had with healthcare professionals, bank managers, CRA agents, PSW’s, social workers, lawyers, family, friends, strangers, even ODSP agents themselves, they all express and agree how unfair, archaic and draconian the system currently is. I once said that I fear homelessness/poverty more than I fear death. Now I fear I’m staring all three straight down the barrel.

I had read in old legislative transcripts, that when the ODSP was first introduced in 1997, the intention was to make a clear distinction between persons with disabilities and those on regular welfare. That intention and distinction has clearly long ago fallen by the wayside. When speaking with representatives from some of the various agencies that I’ve come in contact with, clearly many of them have not made that distinction either. Coming from the corporate world and professional environments, I approached each agent or representative as if they were my peer. It didn’t take very long at all to realize that sentiment is far from being reciprocated. Regardless of one’s background or approach, you’re talked down to, treated as a second-class citizen and/or some sort of pariah trying to scam the system.

In short, I once had a well-established career along with a very respectable salary which I was forced to leave in 2012 due to the onset of a chronic degenerative neuromuscular condition. As I had recently started a new position at a new organization, I was not eligible for workplace insurance and ‘fell through the cracks’. After supporting myself for 3+ years on my own steadily depleting assets, and an extended hospital stay in 2015, I turned to the ODSP and our ‘social safety net’ for help. I was horrified to learn of the profoundly unpalatable options that were presented to me, but as a single person with no dependents and no family to fall back on, I had nowhere else to turn. I felt completely stripped of my dignity and self-worth as I navigated the many punitive and draconian rules and regulations in order to be assimilated into a system that would not provide me with enough money to survive on. I now live in abject poverty as I count down the months and days that are leading to my inevitable eviction and homelessness, which will happen long before my name comes up on the centralized waiting list for decent subsidized/affordable housing. Frankly (and sadly), I feel as though I’d have a shorter wait on the waiting list for doctor assisted suicide. That may not be a ‘politically correct’ thing to say, but that’s how I feel.

The writing is on the wall for me, and my disability is not going away, as it is for countless others in similar situations unless something is done NOW to break this cycle of poverty.