Tag Archives: special needs

Lack of Accountability in the Healthcare System


I spoke out about the lack of accountability in the healthcare system in Ontario and got burned.

According to the Community Care Access Centre (CCAC) in Ontario, I have “the right to express concerns and recommend changes without fear of reprisals, interference, coercion or discrimination”. That is a lie.

When my 14 year old son, Jacob, was on the receiving end of incompetent and inconsistent nursing care, I spoke out. Loudly and repeatedly.

I began by discussing my concerns with the nursing agency and Jacob’s CCAC case manager, the person responsible for overseeing the agency and ensuring they fulfill their contractual obligations. When that failed to resolve the multiple safety issues, I escalated my discussion to the senior management of both the nursing agency and the CCAC.

Nobody at either organization denied there were problems with Jacob’s nursing care. For example, no one disputed that Jacob’s nurse should not have been in a drug-induced sleep during a day shift. I wasn’t rebuked for expressing concern about a nurse’s skill when she allowed my son to fall out of his bed onto the hard floor. And they didn’t think I was overreacting when a nurse tried feeding him food orally, or when another nurse tried giving him medication in his mouth, instead of through the feeding tube in his stomach. Although they never apologized for not filling a nursing shift, the agency and CCAC did acknowledge that shifts were missed because they were unable to find a nurse to care for my medically fragile son; however, as I later learned, the missed shifts and many medical errors were seldom recorded in his file.

After multiple weeks of inaction, the senior management team of the CCAC began chairing a weekly conference call with me and the nursing agency in order to address the problems and maintain a consistent schedule of competent nurses for Jacob. The calls proved ineffective – instead of the service providers presenting supportive strategies, I was forced to lead the calls by highlighting the issues and requesting plans to fix the problems. The agency executives seemed ill-prepared for the calls, and failed to know how to respond. Repeated claims that their administrator was “trying his best” quickly grew stale. Their excuses did nothing to ensure Jacob’s safety at the hands of their employees. Despite factual documentation supporting my allegations, the agency and the CCAC representatives united in stymieing any long term remedies, or legitimately working towards a real plan. I was fed a bunch of platitudes, including they were trying hard, they don’t have any more nurses and I needed to be patient. An ironic excuse for why they were having so many problems was “the system isn’t set up to provide 24-hour nursing care”. This startling assertion came from executives whose primary business function is to supply nurses and other home care services in the community!

My son was subject to dangerous and sporadic care, I was the bad-guy and “the system” was at fault.

Jacob has always been dependent on nurses, but it has only been in the last few years that his medical needs have intensified and he requires around the clock care. With over a decade of experience, I was not a stranger to the vigilance I had to employ to maintain a safe level of home health care, but the people responsible for ensuring the care were accomplishing the exact opposite: they were so used to blaming others that they could not find a way to help Jacob. It was a case of learned helplessness at its finest. The actions of the agency and the CCAC created stress and hardship for our family and we were already drowning in the responsibilities and challenges involved in caring for a very sick child.

I refused to concede that we had the best nursing care the province could provide because it wasn’t enough to keep my son safe. Jacob deserved better and I wasn’t going to stop until he had the competent and consistent care that he required.

After more than four months of weekly conference calls proved useless, the CCAC folks were exasperated by the relentless thorn in the their sides that was me. The CCAC hired an outside mediator to chair a couple of face-to-face meetings with all parties ostensibly to assist our group in creating a sustainable plan for Jacob’s care.

Nobody contested that Jacob required 24-hour nursing care and everyone agreed that Jacob’s needs were complex and unpredictable.

The meeting began with the mediator placing a 5×7 framed photo of Jacob on the table, in full view of all parties to ensure that everyone remembered we were working towards a comprehensive care plan for a real boy with thoughts, feelings and rights. There was palpable tension in the room, but nearly two hours later we ended on a friendly note. We even closed the meeting with hugs and handshakes, to-do lists and plans to resolve the situation quickly.

At the second, and final, meeting it was instantly apparent that the action items from the first meeting had been completely ignored and the follow-up items were not completed as discussed.

Once again, I was hit by the inexcusable wrong that there is no process in existence to hold the CCAC and nursing agency accountable for their unfulfilled promises and lies.

After exhausting all the traditional avenues to resolve the problems, I approached the media.

Together with a couple of other beaten down, exhausted and desperate mothers, we shared our stories of incompetence and mistreatment by both the CCAC and nursing agencies, with the hopes of provoking change and instilling accountability. I knew I was not the only one facing the arrogance and bullying of the CCAC and nursing agencies. Global News and The Toronto Sun newspaper clearly exposed this fact.

The media coverage strategy backfired. Jacob and I were punished.

The nursing agency that was responsible for sending incompetent nurses fired us even though they had supplied nurses we liked who enjoyed working with Jacob and my family. Instead of forcing the nursing agency to ensure they hire skilled and well-trained employees, the CCAC allowed the agency to cut off care. Then, almost as a bonus, the CCAC awarded them more contracts to replace the nursing hours the agency gave up when they refused to service us.

At the same time, the Community Care Access Centre decided that they had enough of me.

Without any warning, the Senior Director at the CCAC sent me a letter in which she explained that she was scaling back the management of the nursing hours (not withdrawing nursing care) – instead of being responsible for ensuring that all the shifts were filled, it would now be my sole responsibility to ensure that we had nurses for all but a fraction of the hours. If the shifts were unfilled, they were not to be contacted. The reason they gave: Jacob hadn’t died when they expected he would.

The unremitting anxiety of dealing with unskilled nurses and inept managers paled in comparison to the wallop of those words. But instead of accepting this bombshell, I didn’t retreat. When you’re the mother of a chronically ill child, you have no choice but to fight. I would not cower in a proverbial corner and let the CCAC steamroll me into submission. My son’s life was at risk.

I approached the Minister of Health whose office was sympathetic to our situation and tried to intervene. But the CCAC was no match for the Minister’s office. Like a shamed dog with its tail between its legs, the Minister’s office backed away. They explained to me that their office did not have the authority to tell the CCAC how to operate.

It’s been over a year that Jacob was discharged from a 236-day hospitalization. He is still without competent, consistent and sustainable nursing care. We have a new nursing agency who is extremely devoted to finding solid nurses – but it is not enough.

Both the CCAC and the original nursing agency must be held accountable for the recklessness with which they have been operating at the expense of my son’s well-being.

Currently, I am working with the brand-new Patient Ombusdman and the Child and Youth Advocate who are united in helping me ensure that Jacob gets the care he needs.

I am not backing down, I will not be intimidated. Not when my son’s life is at stake.

Before and After


before and after

In my mind, my life as a mom is divided into two: before and after. The “before” is prior to Jacob getting sick and spending 236 days in the hospital. The “after” began when he was discharged from the hospital and my life, and that of my family, changed dramatically. In reality, the change began on January 23, 2015, the day I frantically drove my son to the hospital when he struggled to breathe, his face an unnatural shade of blue-grey and the sounds coming out of his throat signaled that he was fighting to keep his airway open.

My “before” was the life I adapted to following Jacob’s birth in 2002 and his diagnosis of Pelizaeus-Merzbacher disease (PMD), the neurodegenerative genetic disorder that affects all aspects of his life.

Despite the challenges that accompanies PMD, Jacob grew into a happy child whose favourite activity was to chill with his friends. He loved to swim and downhill ski. His Halloween costumes were often the most creative in his school and in our neighbourhood. Jacob thrived when he was integrated into mainstream classes and programs and despite his need for constant assistance and nursing care, his health was stable. He was fed by a tube inserted into his stomach when he was six weeks old and required more medication than most of the geriatric population. Despite all that, he was healthy, in his way.

When Jake was discharged from the hospital in August 2015 following a series of prolonged illnesses, his needs were vastly altered. At his core, he was the same kid who loved to laugh and found reasons to smile despite the hell he experienced and the frequent need to have a tube inserted down his throat to suck out the mucous that often blocked his airway. The Jacob who was discharged from the hospital is medically fragile, his health is unpredictable and the only consistency in his care needs is that it is inconsistent.

Life “before” wasn’t terribly easy, but it was manageable.

I had my share of battles on Jake’s behalf, but most of them were to ensure he was treated as a person, with thoughts and feelings, not simply as a body in a wheelchair. It was surprising how many people in positions of responsibility, including medical professionals and educators, would ignore my son and not address him directly, preferring to assume that because he was non-verbal he didn’t understand conversations around him. Or maybe they were so uncomfortable around disability that it was easier to ignore my son than look into his big green eyes and say hello.

Our family of five seldom went to a restaurant together, and we only went to a movie as a five-some once. Most of the time, my family outings were with my husband and my twin daughters, Jake’s younger sisters, or with my husband and Jake. Once in a while we would go to a party or an event as a quintet, but always aware that Jacob’s medication or feeding schedule would necessitate an early departure. We never went on vacation together and Jacob has never been on an airplane or a train.

My “after” life is spent trying to ensure that the nurses we have know how to properly care for my son.

His suction requirements are diametrically different from the textbook procedures so even the most experienced nurse needs to learn how to safely clear Jacob’s airway.

Gone are the days that Jacob is awake and ready to go to school before the bus arrives at 8 am. The Jacob in my “after” life does not get out of bed until 11am on a good day, does not regularly attend school because his immune system is too weak to withstand a simple cold and plans are made with the tacit understanding that they are tentative until the moment of departure. He attended school for one hour over the entire academic year last year, and this was a significant achievement for him.

Gone are the days that we can schedule an activity for Jacob ahead of time and reserve his spot. Gone are the days that my son could come with me to the grocery store or to run an errand. These days Jake’s breathing challenges are almost constant and sitting in his chair is often too taxing for his respiratory system to manage.

Before, our nights were routine – at 11 pm a nurse would arrive and spend the next nine hours in Jake’s room, ensuring his safety, providing medication and tube feedings, and turning him every two hours. The possibility of choking was always present, but we knew how to properly position him to minimize the chance of an accidental aspiration.

My “after” life is dedicated to doing everything humanly possible to help Jacob live a full and meaningful existence. But the roadblocks placed in front of me by the very system that was supposed to help support my son make climbing Mount Everest in a blinding snowstorm trivial in comparison.

Watching my son’s health deteriorate while his cognitive abilities and interests remain intact is heartbreaking at the best of times, torturous much of the time and depressing all of the time. I need to repeatedly summon the fortitude to stand up for my son’s rights as a human being, to fight for nursing care that is competent and consistent. My efforts are dedicated to navigating a health care system that despite the catchy “Patients First” slogan, puts the desires of the administrators ahead of the needs of my son, and allows medical professionals to acknowledge the deficiencies in the system but enables them to shake their heads in sympathy while stating that it is beyond their scope of responsibility to help.

My “before” life was different from most of my friends’ lives but it was mine. I knew our limitations  and figured out how to cope with Jacob’s challenges while ensuring all my kids had a variety of experiences. My “before” existence involved a lot of driving – transporting Jake to school, to appointments, to activities.

Instead of using the “after”  time to build memories with my son, too much of my time and energy is focused on ensuring Jake gets qualified and dependable nursing care.

Without my diligent oversight, I would not have known that a nurse tried to place food in Jacob’s mouth, I would not have awoken a nurse out of her drug-induced sleep at 3 o’clock in the afternoon, I would not have seen that a nurse did not know how to properly measure a dose of medication and I would not have witnessed incompetent nursing skills that would not have been tolerated in any reputable hospital in the province.

This precious “after” time that should be spent with Jacob and the rest of my family is dedicated to making sure we have a nurse scheduled to arrive for her appointed shift because Jacob is dependent on the care of skilled people to help ensure his airway is clear and his breathing is as comfortable as possible.

It’s been many years since I’ve thought about the concept of fairness – it’s not fair that Jacob has PMD, it’s not fair that my son struggles for air and it’s not fair that all my children have to watch, helplessly, as their mother devotes so much effort to ensuring Jake receives quality care at the expense of creating precious family memories.

It simply isn’t fair.