I am writing this letter from my apartment in north end Halifax, which I haven’t left in over three weeks except for one appointment. Many days since the beginning of the COVID-19 crisis, my Home Care workers have cancelled their regular visits. I feel like my home has become a remote island beyond human connection, and I am a castaway. I can almost see the neighbouring island of Northwood from my window, but my Home Care workers (who work there) no longer come to care for me. Lately they are cancelling every day. I am afraid about what is going to happen to me. I feel abandoned by a faulty health care system, and I am worried that I will not live through COVID-19.
I have a chronic illness called Ehlers Danlos-Syndrome (EDS). It impacts my muscles and joints, meaning, for example, that my ability to grip and carry items has significantly deteriorated over time. EDS also comes with other complications and health issues. I use a wheelchair for mobility and rely on the essential assistance of Home Care workers to aid me with everyday tasks such as bathing, laundry, meal preparation, taking my medications, and changing my catheter.
These may seem to some like simple tasks, but for me each of them is essential. There have been times in the last couple of weeks when I have not been able to eat, have not been able change my dirty clothes for days, and haven’t been able to bathe for days on end. On some of these days, I’ve gone without medication and I’m forced to ration my fluid intake so that my catheter bag wouldn’t overfill.
I referred to my home care as essential. Because for me, and for many people with disabilities, it is essential. The problem is that the Province of Nova Scotia does not agree. During the COVID-19 pandemic, the Nova Scotia government has deemed several services essential. Unfortunately, Home Care has not been one of them. This neglect has a very real and very human toll. Many of my Home Care workers haven’t even bothered to show up to scheduled appointments or they cancel on me last minute. This leaves me without critical care and no time to make a backup plan such as having a friend help me with eating, bathing, toileting, and other essentials of being a living human being.
Home Care in Nova Scotia is contracted out to businesses (like Northwood, among other care facilities). These businesses have not moved to emergency plans as the public health system has done. Emergency plans prioritize people with the greatest needs. Without such a plan, I (and many others like me) am left without critical support that keep me healthy and alive. I am worried that the lack of care will mean that my immune system becomes compromised. The truth is that people with disabilities and chronic illness are at higher risk for complications if we contract COVID-19. It is a scary time to be a person with a disability.
My Home Care is essential, and I need the Province to see this. People in our provincial government don’t understand the level to which people depend on Home Care. In these times of crisis, I feel like nobody is talking about the ways peoples with disabilities will be impacted due to neglect, and this is frustrating. Most people accessing Home Care do not have other options, otherwise we would not need the services. We are vaguely expected to have a back-up plan if our Home Care cancels. But I can’t have a back-up plan with no notice or for extended periods of time. Days keep passing by without any respite. Groups that were my back-ups have closed and family and friends have been forced to self-isolate or are themselves sick.
Home Care is not a luxury for me. It’s a less than ideal system, but it’s one that I depend upon. It has many problems: throughout my experience having Home Care there has been no consistency in workers, so there is a constant flow of new people coming into my home (when they do come). I feel strongly that to limit the spread of COVID-19 to vulnerable people, businesses such as Northwood should be required to seriously limit the number of people visiting each client. This would also provide more consistency in care, resulting in better care. Many people with disabilities have been forced to choose between unsafe situations (for example, relying on abusive Home Care workers, of which I’ve seen more than a few) or no care at all. And now even that choice is gone. No care has become the unfortunate default, as my workers keep cancelling.
As a person who relies on this kind of care, I am not able to socially distance myself, and so I need my Home Care and I need it to be safe. I need human help in order to eat, take my medications, and clean myself. These are such important things. They are a matter of basic dignity and they are a matter of basic health. I have had to reach out to friends and even strangers to provide me with the assistance I need. If I didn’t have these community members willing to break social distancing to help me, I would eventually die of neglect. This is not an exaggeration. It has happened in other countries, where care for people with disabilities is not made a priority. In this time of crisis, it seems like people with disabilities are considered disposable.
The Province of Nova Scotia is making great efforts to keep many Nova Scotians safe. That is wonderful. Unfortunately, the Province has largely left people with disabilities out of this plan. I am living on the hope that myself, my friends, and my community don’t contract the virus, as there are no supports in place to address our health issues until we are hospitalized. And once it reaches that point, terrifyingly, it may already be too late.
The lives of people like me literally depend on those around us taking every precaution so that nothing infectious or harmful enters into our pods. I need my Home Care workers to come back again, and, importantly, I need my Home Care to be equipped with masks and gloves so that they can stay safe while keeping me safe. The Province needs to expand its current COVID-19 response plan to take into account the needs of people with disabilities and compromised health. There needs to be an urgent plan in place to provide community supports for people with disabilities in a way that minimizes the risk of transmitting infection. This means that extra precautions need to be put in place regarding resources like Home Care, food banks, community services, mobility & transportation supports, and access to medications.
And, bottom line, services such as Home Care must be deemed essential. My life depends on it.
I’ve been stuck at home for a while, so at least it’s given me time to think. With all that thinking, I’ve come up with four ideas that the Province should implement quickly to help me and others like me. They are as follows:
- The Province should call on retired workers and those in other sectors who could fill Home Care roles. These people should be immediately recruited, as the need is dire and the clock is ticking. For example, food preparation and housekeeping could easily be provided by people not officially trained as continuing care assistants.
- The Province should provide hazard pay and sick benefits to Home Care providers so that anyone developing symptoms is immediately isolated without fear of wages lost on an already low pay scale.
- There needs to be a limitation on numbers of Home Care workers per individual. I have had up to 21 different caregivers in a week. This increases my risk of exposure. The Province must also take steps to provide sufficient personal protective equipment for Home Care workers and for anyone in the community (such as friends and family) who fills in when my Home Care workers need to cancel. Without this equipment, we are putting everyone at risk.
- The Province needs to immediately expedite and simplify the process for individuals in community to access funding to hire their own workers. Right now, the Department of Community Services has a self-managed care program, which would let me choose and hire my own Home Care worker or workers, thus cutting down on the potential for abusive interactions and exposure to infection. However, I have not yet been able to complete this process, as the application forms are incredibly complicated. For anyone with literacy or other accessibility concerns, this application process is impossible.
How You Can Help
I know that the world is fully of heavy news lately, and so I’m grateful to everyone who has taken the time to read this letter. I hope that reading this has helped you better understand my current situation. I know that there are a lot of kind people out there who want to help. I would love to have your help. Here are some concrete things you can do:
1. Contact the Honourable Randy Delorey, current Minister for the Department of Health and Wellness at 902-870-5899 or Health.Minister@novascotia.ca. Tell him that people with disabilities are being left out of the Province’s COVID-19 plan and this is not okay. Consider sharing my letter with him. Human words sometime help people in power understand.
2. Contact the Honourable Kelly Regan, current Minister for the Department of Community Services at (877) 424-1177 or DCSMIN@novascotia.ca Please give her my letter, and please let her know that the Home Care program in Nova Scotia needs attention in this time of crisis. More importantly, it is the human beings receiving Home Care who need attention. Home Care must be prioritized and deemed an essential service.
3. Contact the media on my behalf. I want to get my story out there. Are you a reporter? Will you publish my letter? I have written it not just for myself, but for the many people with disabilities who are not able or are too ill or exhausted right now to raise their voices. There are many of us, and we need you to help amplify our concerns.
4. Share my letter please! Post it on your social media, email it to your friends and coworkers, post it on a notice board. Anything to help get the word out.
Maybe some of you have some great ideas about what to do or who to contact. Please feel free to leave your ideas in the comments.
Thank you again for reading. Knowing that kind people are out there helps to lessen the fear and helps me feel more connected to the world. I wish you and your loved ones health and comfort in this tough time.
This post was originally published on Andrew Jantzen’s blog Tales of a Homecare castaway
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