In Canada, the COVID-19 pandemic has led to the implementation of numerous laws, policies and guidelines in all levels of government, but how do these affect people with disabilities? Political, fiscal and regulatory decisions made by different levels of government as well as the healthcare system may not always support the rights of people with disabilities. This mixed methods project critically analyzed the impact of relevant laws, policies and guidelines related to care and caregiving on the needs and rights of people with disabilities in Ontario. It incorporated the lived experience of persons with disabilities into the analysis.

Results

The results are available in "Disruptions in care among disabled people and older adults during the COVID-19 pandemic: evidence from Ontario, Canada", International Journal of Care and Caring https://doi.org/10.1332/23978821Y2024D000000033

To learn more about this study, please watch a short video about the results

ASL

Langue des signes du Québec

You can download the French transcript of the video.

You can download the Summary of Research Findings (English) .

It is hard to ignore the devastating effects of the COVID-19 pandemic on the long-term care system in Canada. In Ontario, the COVID-19 pandemic draws attention to long-standing issues with the funding, regulation and oversight of long-term care homes (nursing homes). It is probably not controversial to suggest that long-term care is highly regulated in Ontario and elsewhere. Rules in the form of formal law (e.g. provincial statutes and regulations) are intended to protect the human rights of residents, reduce safety risks to residents and workers and promote accountability in the long-term system. However, a highly prescriptive regulatory regime alone is not enough to protect long-term care residents and workers. Compliance with regulatory requirements is also an important component. Rules that are not followed rarely achieve their public policy objectives.

The goal of this project is to explore why long-term care homes comply with regulatory requirements (or not) in order to improve the performance of long-term care homes in Ontario. More specifically, empirical research will be undertaken to identify different motivations and factors that explain compliance in long-term care homes. Although motivations to comply play a fundamental part in shaping behaviours of regulated entities (such as businesses), other factors, such as enforcement strategies of the respective regulators, also influence compliance behaviours. In Ontario, homes are very diverse in terms of geographic location, ownership and size. Accordingly, one could expect that homes vary in relation to motivations to comply, knowledge about the law, managerial capacity and other resources. Research is needed to understand why they comply, barriers to compliance and whether enforcement strategies will make a difference in their compliance behaviours.

NEW:

The results of the second phase of the project is available:

This chapter reports results from a study about the role of residents and their families and friends in monitoring compliance with regulatory standards in long-term care (LTC) homes (also called nursing homes or aged care) in Ontario, Canada. By spotlighting the context, processes and structures in which users decide whether to express dissatisfaction and grievances, this chapter explains why families of residents may not complain about a potentially serious wrongdoing, even if there is a mandatory requirement to report to the regulator. An anonymous online survey was conducted in 2023, supplemented by highlights from the 2023 inspection reports on LTC homes. This research shows reliance on the use of complaint data to trigger inspections is an ineffective means to promote regulatory compliance within LTC homes.

Ce chapitre présente les résultats d’une étude sur le rôle des résidents et de leurs proches dans le contrôle de la conformité aux normes réglementaires dans les établissements de soins de longue durée (SLD) (également appelés « centres de soins infirmiers » ou « maisons des aînés ») en Ontario, au Canada. En mettant en lumière le contexte, les mécanismes et les structures dans lesquels les utilisateurs décident d’exprimer ou non leur insatisfaction et leurs plaintes, ce chapitre explique pourquoi les familles des résidents décident de ne pas déposer de plaintes en cas de manquement potentiellement grave, même s’il existe une obligation de signalement à l’organisme de réglementation. Un sondage anonyme en ligne a été mené en 2023, complété par une analyse des points saillants des rapports d’inspection de 2023 sur les établissements de soins de longue durée. Cette étude montre que les données relatives au nombre de plaintes et d’inspections ne sont pas un facteur efficace dans une stratégie visant à faire la promotion de la conformité réglementaire dans les établissements de soins de longue durée.

The results are published in:

Lai, Poland. " 10: Complaining is futile? Feasibility of using complaints in the regulation of social care." In S. Köppe, A. Parma, & B. Sojka (Eds.), Social Policy Review 37 (pp. 181–205). Bristol: Bristol University Press. https://doi.org/10.51952/9781447377245.ch010 (open access)

The results of the first phase of the project is available:

Lai, Poland. “How enforcement shapes compliance with legal rules: the case of long-term care homes in Ontario”, Canadian Journal of Law and Society / Revue Canadienne Droit et Société (published on-line April 2, 2024).

https://doi.org/10.1017/cls.2024.4

“Enrolling users to monitor compliance in long-term care (LTC) in Ontario: can it work? – Phase 1”

Some scholars argue that regulation, monitoring, and enforcement can have many different sources and that there is no longer one centralized actor responsible for overseeing and coordinating the entire process (van Wingerde and Bisschop 2022). In this project, I want to explore whether long-term care home residents and their families and friends are willing and able to participate in enforcement and compliance. This project focuses on Ontario.

Introduction

To learn more about this study, please watch or listen to a short introduction video (English with caption)

English with caption

ASL

Langue des signes du Québec

You can download the French transcript of the video.

The projected has completed. Below is for background information only.

I am looking for Ontarians to complete an on-line, anonymous survey. The survey will ask participants about their experiences, knowledge, opinion, and perceptions of long-term care (also known as nursing homes or homes for the aged). Participants will also be asked to review a hypothetical situation and then answer a number of questions. The survey will also ask participants to share background about themselves, for example, their age and gender. Participants will not provide their names, names of their long-term care homes or geographic locations. Please consider participating in an anonymous, on-line survey. The survey is open to anyone:
• 18 years or older
• Lives in Ontario
• Lives in a long-term care home in Ontario or
• Is a family member, friend, neighbour or unpaid caregiver of a current or former long-term care resident in Ontario
The survey will take about 15-20 mins to complete. You can access the survey in late March.

Before you proceed to complete the on-line survey, you will be asked to provide your consent to participate in the research. I want to highlight a few important points:

• • • Participation is completely voluntary. Even after you started the survey, you can stop anytime by just closing the browser.
    • Once you start the survey, you will be asked a number of questions. Some of the questions may ask you to recall events, situations or circumstances that were stressful or uncomfortable.
    • You can refuse to answer any or all of the questions.
    • More detailed information about the research will be available before you start the survey. You will be asked to confirm that you understand and agree to participate in this research.
    • If you wish, talk to people you trust about whether you want to participate.

Watch introduction video about consent (English with caption)

Watch introduction video about consent (ASL)

Regarder la vidéo de consentement (résumé) (Langue des signes du Québec)

You can download the French transcript of the overview video about consent.

How to participate

This research has received ethics review and approval by the Human Participants Review Sub-Committee, York University’s Ethics Review Board (Certificate # e2022-446) and conforms to the standards of the Canadian Tri-Council Research Ethics guidelines.

The survey is available in English and French.

English | Français

In addition, alternative formats are available:

• two videos in American Sign Language that present:
  • 1) the research consent form
  • 2) questions from the survey.
• two videos in Langue des signes du Québec that present:
  • 1) the research consent form
  • 2) questions from the survey

American Sign Language

View consent form video | View survey video

Langue des signes du Québec

Regarder la vidéo de consentement | Regarder la vidéo de l'enquête