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The photo in this post had been brewing in my mind and heart for years, earlier than the narrative of this post. There will be no explanation of the title or contents. The symbols speak for themselves and, regardless of if you know me and my tastes, I expect this photo to tell its story by itself.
The concept had come together, the technique and the execution I was certain of how to accomplish completely in camera, with the most minor of digital processing to create the final image above that you see. Once again, my sincerest appreciation goes to my dad for his help building some supports and my wife for helping me to position a few things safely, without the whole rig coming crashing down. Perhaps one day I will post a behind-the-scenes photo, for now there are much more important things to discuss.
What pushed me over the edge with an urgency to create this photo was the second most significant negative change in my life that I have ever experienced, and by far the most stressful and prolonged. It's long so jump to the conclusion, if you'd prefer.
It's no secret that the Saskatoon Health Region is in a deficit position. Add to that the significant growth in our province's population, especially in the major centres, and you run into even tighter capacity to meet the needs of people. Not just as related to health, but transportation, policing, infrastructure or any of the other public services we use, benefit from and pay for on a regular basis. Many times since I began using the services of the Saskatoon Health Region's Home Care I was told by front line workers that I would end up using private care after growing weary of the bureaucracy and domineering of the publicly run system. 13 years later, those people who told me that were finally proven correct.
The Health Region was on a cost-cutting mission, especially reducing clients who require their services for a longer period of time per visit. What I require is more than a 15 minute meal prep or medication visit. Their attempt to force me out was not met without some resistance. Their methods and reasoning were regarding changes in policy and changes to best practices of care, changes that were implemented years earlier, but conveniently ignored until now. The current method of care was the method I had been receiving from the first day I was in City Hospital for rehabilitation over 19 years ago. It had not changed in quality or outcome or method, methods still used by the vast majority of peers I spoke to during the length of this fight.
Weak reasoning focused around an autonomic blood-pressure response, experienced by almost all quadriplegics, was the spindle they were teetering on. The autonomic response occurs whether I am in pain, being tickled or in the cooler section at Costco. Any stimulus below my level of sensation causes it. It happens, it's my body's way of communicating with me that something where I cannot feel it is occurring, subsides within seconds of alleviating the source, and in all my years with a disability has never been life-threatening. All of a sudden, this was a big concern for them. At their request I immediately booked appointments with the appropriate doctors to confirm that the way things were, and have been since my injury, was just fine. After those appointments it was very clear that I had the support and reassurance of both my family doctor and the other specialist with whom I've worked, closely. Both of those I had worked with much more recently and further back than the doctor whose opinion the Health Region chose to agree with. You'd think I was dealing with an insurance company.
Already, with Home Care, I had felt like a time slot to be filled, not a human being who wants to make the most of his life, whatever capacity it might hold. The unrealistic options being given to me would have cost the Health Region ridiculously higher amounts of money and been completely unscheduled, which would've made my life a matter of sitting around waiting for Home Care to show up. On enough days I already struggle to place a high enough value on myself, spending the best portions of my energy to bring value to my family, friends and society. The thought of this becoming my life is as discouraging and depressing as anything I had experienced. Breaking my damned neck wasn't even as discouraging because as soon as I was stable I was being encouraged by those who have gone before me, assuring me that you'll be back to living life, soon enough. Now, those whose duty it was to improve my ability to live a quality life, or the ones threatening to tear apart all that I had built.
Why not just give up the fight and seek care somewhere else? Firstly, because it is government subsidized. In fact, as I found out later, the subsidy for the 14 years prior to this had been calculated incorrectly and by my math, I had been overcharged by the Health Region for more than $20,000.
Secondly as to why not give up, because it was wrong for them to push me out. A citizen of the Health Region has a right to the public service (barring any misconduct or disrespect, obviously none of which would come from a person like me) and for them to dictate my life and my care was wrong. Meetings with individuals like one of the Region's bioethicists (the man who, through this whole process, I had great respect for because of his fairness, levelheadedness and reasoning) along with a plethora of other people in positions you don't just casually make a meeting with, resulted in what I will consider an acceptable compromise.
I am aware of those who went outside of their duties on my behalf. I'm not certain they would have had I not fought so hard, maintained communication by writing in order to catch inconsistencies and liars in their lies, nor if hadn't had occasional inside bits of information from eyes on the inside for me to catch them off guard with during certain meetings. My overall feeling at the end of it was that I felt fairly well equipped to push back. I cannot imagine how difficult it had been for those who had no choice but to give up, when being pressured so hard by people in authority they should be able to trust. I know there were more before me because I spoke with people and I know for a fact that I was the last client with my type of care to be "addressed". I do not know, had I been the first, if I would have set a precedent for people to demand what they have a right to, but that is in the past.
The one person in authority, who I would have expected to have had my back, did not. Decades of success were thrown out the window because of a best practices change that suited the current financial situation. One of the phrases you'll often hear from any reputable source is that no two spinal cord injuries are identical. The new best practices policy, ironically, does not work perfectly for everybody and, in fact, often works more poorly for those who have been using the previous method for the majority of their disabled lives. The new best practices method is inadequate to complete the care properly and the alternative using newer technology is viewed by some as destructive in the long term. It could be compared to running your sharp kitchen knife through the dishwasher. It may be easy and save a few minutes in the beginning, but once that blade is dull and all of your food preparation takes longer each and every time, in addition to adding the danger factor of using a dull knife, you have significantly harmed the usefulness and life of that knife, forever. Knives can be sharpened while damaged human reflexes cannot.
One's right to self-determination, a human right, was in question. I won't get into the details except to say that because of the change in what is considered best practices, I remind you, ineffective or a great number of paraplegics and quadriplegics, is no longer considered ethical to "force" someone to complete the care. By forcing a health region employee to complete the care it supposedly violates them. But, according to the Health Region it's acceptable to disallow a client any right to planning and living their lives (because the caregiver could arrive at any time of the day) and also is acceptable to use technology without long-term study and potentially destructive to the client. I cannot help but ask who will be forcing physicians opposed to Physician-Assisted Suicide to do something they are morally against, if the time in this country comes. But, I digress.
Thankfully, my resolve made for the agreeable compromise I spoke of. That compromise was the quick approval of me for the Health Region's individualized funding program, where I am allotted funding to pay for private care, care that is not cheap for anyone simply seeking it without financial help. This is a much more costly option for the government and taxpayers but, it's federally funded so the provincial government, and local health region, doesn't care because they get to pass the buck/bill. Politics, good governance and financial prudence at its best!
After a brief but reasonable conversation with the fully medically trained private caregivers, they happily received me as a person to be cared for. No longer am I a time slot to be filled but someone whose business is appreciated and whose satisfaction is wanted. In fact, I feel total freedom to adjust the schedule when needed in order to take advantage of an opportunity that may come my way which necessitates an adjustment. In addition to the reasonable people I work with now, those who give credibility to my intelligence and my unwillingness to harm myself, understand that it is a team effort. They know that I'm happy to advocate for my own care, with them reliably there, when I need any support. As mentioned, which brought them reassurance about any of the a rational concerns brought about through this rigmarole, I had the support of those physicians who knew me best and who live in the real world, not the one of theoretical medicine which tries to squeeze unique individuals into the same mould.
Had Home Care management not lied to me and tried to deceive me, but come to me stating the situation and worked with me to make the change, I would not have been so steadfast in my resolve. That our healthcare system could attempt to do such a thing to me, in Canada, frightens me. Without the support, experiences and information I had available to me I have no idea what would've happened. Any lingering bitterness comes from those lies and deception, and the amount of stress and hopelessness I endured, when I should have been exuberant enjoying the growth and development of our daughter.
Conclusion (TL;DR)
1. The government was trying to manage the overcapacity state of healthcare in our province. I would be pretty certain in saying that they did not tell health region management to lie, bully and pressure people out of the system. And, don't blame the Saskatchewan Party. The individualized funding program has been around since the NDP were last in power. It's not Brad Wall's steps towards privatization of our healthcare.
2. Go ahead and throw as much money as you want at hospitals. All the staff and all the money you could throw at it, as it exists now, will not make more beds. Trying to get people home and under Home Care as long as they need it, as soon as possible, is trying to free up those beds for the next people needing one.
3. So, throw more money at Home Care, right? The steady decline in what care aides are able to do has been obvious to me ever since I began receiving the services. Along with that, morale has plunged and far too many of the best caregivers have had enough and either moved on to something else, or lost their drive to do the best they possibly can. Meanwhile too many of the people around them do a half-assed job so when they do try to go out of their way to do something that really makes a difference in someone's day, it's probably not on the list of designated tasks, and they get reprimanded by management for it, instead of praised for making a difference and showing what it looks like for an organization to care about people.
4. While some employees cut corners, make significant mistakes or have repeat injuries because they do not follow their training, what can be done to make the lives of clients better by care aides is throttled because management wouldn't possibly think of calling out an individual on their laziness or ineffectiveness. If they did, their union would (and has) defend them in obvious cases of wrong behaviours. The result is to diminish everyone and what they are allowed to do for people, damage their reputation and leave the problem for the next shift to deal with.
5. Do I think that private healthcare is better? Not necessarily. It's more costly, in the long run being paid for by insurance or other subsidies results in cost cutting which results in reduced quality of care. For now, I know that I am treated like a customer who they want satisfied and loyal. I would love to see our public system revitalized, but there is no accountability, threat of reprimand or loss of shareholder confidence. We are the shareholders and it doesn't really matter which boss we vote for.
Somewhere in there there needs to be some hard work, a huge attitude adjustments and the courage to call out individuals on poor work ethic and bad attitude, and much more positive reinforcement of staff doing a great job. Organizations on all sides should know better than to protect their members, employees, managers and clients from improper behavior. When you don't, everyone looks bad and the mandate of healthcare being a team effort becomes a laughably depressing ideology.
