I am a wheelchair-using mother who needs help accessing showers and with some transfers for day-to-day activities. Since the beginning of the pandemic, I have paid for some personal protective equipment (PPE) on my own and for the folks that come to our house to support us. This is a healthcare inequality that is going unnoticed in Ontario, an inequality that will inevitably result in the loss of life.
In April, the province announced that it is PPE secure, a claim that is fascinating because while it may mean that the supply of PPE is sufficient, it says nothing about how it is distributed. It is not being distributed to me, my daughter or the nurturing assistants that support us both.
I currently get support for personal care through the Toronto central Local Health Integrated Network (LHIN) that distributes funds through a program called Direct Funding that allows me to manage my care under a contractual agreement.
Many people (although by no means all) who use direct funding are on fixed or low incomes. Similarly, personal support workers and nurturing assistants, who are overwhelmingly people of colour, are undervalued and often unseen. These workers spend long hours with multiple people a day and the demands require specific skill sets. The lack of commitment to PPE for this workforce speaks volumes about whose lives the province feels are worth less.
Early in the pandemic, self-managers using the program received $550 as a one-time PPE fund for themselves and the people that support them. In our house, we started to run low in supply in July. When I made this known to the direct funding program by email, the response was that the Toronto central LHIN had not committed to additional funding for PPE. Earlier communication had been sent out with a list of potential suppliers and charities distributing PPE for free but what was becoming known in the disability community was that these supplies were limited as the charities themselves were running out.
The funds dwindled so quickly because the first order of masks that I purchased came with 50 in a box for $100. In August, we received a box of masks from a non-profit organization that shared the news that it too was running low.
On Aug. 17, I wrote to the board that manages direct funding about the need for a timely response on the lack of PPE. The response that I received made me ill.
The board stated that the Centre for Independent Living in Toronto (CILT) has engaged in extensive fundraising for PPE purchase for consumers (from April-July). A significant portion of that fundraising is intended for self-managers who contract COVID-19 rather than a PPE supply that would prevent the spread of the virus. It further states that its surveys showed there was no significant interest “from the community” in a bulk-buying PPE program.
The letter then asks, what further steps do you think we need to take in order to further this work?
This question indicates that the entire board and ministry of health are bathing in wilful ignorance. What is needed as a starting point is a commitment to ongoing PPE for anyone involved in homecare, for attendants, consumers and workers delivering these essential services. Without this commitment, a loss of lives is inevitable and those will be lives of people living at the margins.
Ontario’s triage protocol, which is being redrafted after much public criticism from organizations representing marginalized communities, states clearly that if people with specific disabilities contract COVID-19, their care may be deprioritized during a COVID-19 surge. My perceived state of health falls within that protocol. If I become ill with COVID-19, I may not receive life-saving treatment. That is what is compelling me to write this article.
Another reason is that staff at CILT, an agency that is peer lead and says it represents the disability community, told me I could access PPE via another charity, that although the supply was limited, this was sufficient because its surveys indicated there wasn’t an interest in bulk buying.
I want disability organizations to say that disabled lives are valuable, that attendants and nurturing assistants are valuable and that, based on a commitment to both disability justice and anti-racism, PPE must be secured for all disabled people and the professionals that work alongside us every day. This needs to be a priority in homecare settings. Anything less is unacceptable. Instead, I was told the status quo is acceptable and that disabled consumers are not interested in securing PPE.
I am trying to fathom how a strong group of community leaders could write such an unthinkable response. As a member of the disability community, I am heartbroken. I am wondering why leaders at the ministry of health and CILT cannot seem to acknowledge that this is a problem, that I don’t have a secure supply of PPE for myself, my child and the people that support us every day.
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I am very grateful to read Terri Lynn Landon’s perspective. I hope that the triage protocol is completely rethought as it denied the dignity and worth of all people who are living with disabilities. I remember in a review after SARS of what worked and what did not work members of the “disabled community” saying “if you are not at the table you are on the menu.” Many years later people with disabilities were once again not at the table. I hope that those given the task of creating and reviewing criteria for care during a pandemic will be far more inclusive across all marginalized populations. Including people with a lived experience of disabilities, or their advocates, can help create a response that is respectful and fair to those who have a quality of life that might otherwise be prejudiced by ableism.
Thank you for speaking out; I’m so very sorry that you are encountering these barriers. Aside from the gross injustices, what strikes me in your story is twofold.
First, the prioritization of life based on labeling without any personal context, illustrates failure of socialized medicine at its highest. This inequality alone should alarm all Americans and provoke our vigilance towards preventing conversion to any similar system.
Second, the differences in expectation of PPE supply chain management. In the US, receiving PPE is largely employer driven or purchased by oneself. If public interaction is required as part of your job duties, then employers typically provide PPE for their employees. In performing day-to-day activities, PPE is a personal responsibility. Government provided PPE is not something that I am aware of other than at the local level for students attending in-person schools. However, I am thinking that PPE would still be quite easily attained through various agencies or networks, both non-profit and government associated. Though, assuming the worst, washable masks are widely available at low cost; they have almost become an ornamental accessory. Gloves unfortunately remain expensive.
Translating this back to your situation, since you are managing your own care through a government?? Sponsored program, I would expect adequate funds for gloves and other materials to be available for your “care budget” to cover your needs. On the other hand, PPE for your caregivers should be provided by their employers. If they are self-employed, then that would be a personal provision. Please note, I’m not saying that this is the correct supply chain, I’m simply making comparison to what I see in the US.
I hope that you are able to find adequate supplies. Stay safe!
Excellent article. Disable persons and especially seniors with a fixed income. I hope you will be able to get the supplies you need. The Ontario government and the federal government is not going to help. However they spend Billions on people that do not deserve it. What happens to a seniors who worked foe 45 years and retired. They are not going to help them. Many times i call or email my Falderal and Ontario MP. But they say or reply they are working on it. So if you are not in a long term facility nothing is done for you. I guess they do not like old people that live in their own house.
It makes me speechless when I read this “Denying PPE and professional support for the disabled and marginalized is a deep injustice”. This is a healthcare inequality that is going unnoticed in Ontario, an inequality that will inevitably result in the loss of life.
I am not sure what our Government is doing but they have millions to give out to other Countries. Wouldn’t it be here to start first with our communities that have a need to fulfil first?