Through the first months of the COVID-19 pandemic, information about where to find precious commodities like masks and gloves and other personal protective equipment (PPE) items was shared and traded by many, particularly by individuals with disabilities who need regular physical assistance with activities of daily living like showering and dressing. Many people checked with traditional sources like medical supply stores, online retailers and big box stores, but not everyone would think to order surgical masks from their local convenience store to be delivered the same day, no less, via a food delivery and takeout app.

This unique suggestion came from one Toronto man in a Zoom call with a few dozen other participants of the Direct Funding program, which is administered by the Centre for Independent Living in Toronto (CILT). The participants are funded by the program to hire and manage the workers who assist them through the day; since it is impossible to maintain physical distance when one person is helping another to take a shower, PPE is critical for the health and safety of both individuals.

So, these program participants, using similar ingenuity and resourcefulness, offered their own tips and hacks in acquiring PPE. Some suggested contacting auto body shops and nail salons and dental supply companies – businesses that were closed during the early months of the pandemic – to request their equipment supplies. Still others contacted small, independent neighbourhood pharmacies, which offered them supplies they put aside for customers with greater needs.

CILT, an Iler Campbell client since the early 1990s, is a community-based resource organization run by people with disabilities, for people with disabilities. The organization operates under the philosophy of the Independent Living movement which encourages people with disabilities to take control of their own lives by exercising their right to examine options, make choices, take risks and even make mistakes.

The organization also aims to raise the profile of disability issues by telling the stories of people with disabilities. CILT Executive Director Wendy Porch was recently invited to TVOntario’s current events program The Agenda to discuss the challenges faced by people with disabilities living in lockdown due to the pandemic. Those difficulties, she noted, included physical barriers to get tested (for example, taking accessible public transit buses to testing centres where they might infect or be infected by other passengers) and the lack of PPE made available to individuals who need assistance with activities of daily living, including those on the Direct Funding program and the scores of others across the province.

While CILT staff are frequently called on by media to comment on subjects involving accessibility, one recent project has allowed people with disabilities to become the storytellers. The D-Next Accessible Media Lab is led and run by a creative team of new media artists, film makers, journalists and advisory members with disabilities. CILT views D-Next as a valuable resource for producing authentic portrayals of people with disabilities who are under-represented in mainstream and social media.

CILT’s core programs – including peer support, independent living skills training and the Attendant Service Application Centre, a centralized access and application point for attendant services in Toronto and York Region – are focused on people with disabilities in the Greater Toronto Area. In recent peer support gatherings via video links organized by CILT, many people who live in group settings that were hard hit by COVID‑19, like long-term care facilities or group homes, voiced their fear of contracting the virus, while at the same time feeling trapped as they were not permitted to leave their rooms due to infection control measures. “They feel like they are climbing the walls,” noted CILT’s peer support worker. Participants also shared resources they had found for free grocery support.

Direct Funding is CILT’s only province-wide program. The self-managed attendant services program, which started as a pilot in 1997 with 75 people who wanted more control and flexibility in their lives, now has nearly 1,000 participants in every part of Ontario: urban and rural, even individuals who live on islands.

Direct Funding program participants, called self-managers, receive funding on a monthly basis to employ and schedule attendants to assist with activities of daily living, like showering, dressing and eating. The flexibility and control of being able to recruit, train and schedule these workers is balanced by the responsibility of maintaining a payroll and following provincial employment standards. Applicants, some of whom might not otherwise be able to remain in the community, as they require more physical assistance than can be provided by the healthcare system, must demonstrate eligibility before being accepted on the program.

Each Direct Funding program participant has an average of between one and five attendants; every budget is unique and tailored for their particular needs. So, in normal times or amid a pandemic, they have control over who is coming into their homes to assist them, and when – for which many participants express relief. One individual voiced his appreciation at a video meeting of program participants, a couple of months into the pandemic, saying, “Without this program, I’d be in an institution – and look what happened there.”

Iler Campbell assists CILT with legal issues throughout the year; in particular, the Direct Funding program often seeks advice with the many legal issues that arise in administering a program that funds its participants to hire their own personal attendants. These may include questions about employment legislation, legal agreements, program eligibility or human rights. Iler Campbell is very proud of its long-standing relationship with a trailblazing organization like CILT.

Filed in: Charities, Client Profiles

Tags: Accessibility, COVID-19, Disabilities, Independent living