Two groups have an especially direct interest in a socially just and effective home care systems in Ontario: those who receive care and those who provide it. According to Trent sociology professor, Dr. Mary Jean Hande, the system works for neither.
Partnering with the Disability Justice Network of Ontario (DJNO) and Trent Canada Research Chair (CRC) and political studies professor, Dr. Bharati Sethi, Professor Hande recently received a Social Sciences and Humanities Research Council (SSHRC) Partnership Engage Grant to implement a research project that will help to direct changes to the home care system.
What is home care and why isn’t it working?
Home care is any type of care or service that people receive in their homes or in a community-based setting that allows them to avoid going into long-term care. Professor Hande has a particular interest in home care provided by immigrant care workers, who are the growing majority of direct care providers in Ontario but receive the lowest wages.
Currently, publicly funded home care services are not sufficient to meet the needs of most Ontarians. The publicly funded services are so underfunded and under-resourced that people who have complex, ongoing care needs often have figure out a way augment those services by using private caregivers, hiring people privately, or working with immigration programs to bring people into their homes. The system is not well organized, is not meeting people's needs, and results in people—especially those with low incomes—being pushed into long-term care because they can't access adequate services.
Following revelations of high death tolls, scandals, and profound staffing shortages in long-term residential care facilities (nursing homes) during the pandemic, disabled and older people are often desperate for home care alternatives.
“Our partner organization, Disability Justice Network of Ontario, does case support for people navigating home care services and they regularly have people reach out to them saying, ‘I'm going to end up in a long-term care home unless I can come up with a solution right away. And the only way I can afford to hire a home care worker is if they're a new immigrant or they're a live-in caregiver.’ People are turning to immigrant workers because they know they don't have to be paid as much,” Prof. Hande explained.
Significant problems also exist for those providing home care services. Immigrant home care workers face racism on the job and—since the home care system receives so little oversight—basic employment standards are often not being met. Home care workers often work well over 40 hours a week, sometimes barely making minimum wage. This difficult work environment, intensified by the pandemic, has resulted in rapid worker turnover and a huge shortage of home care workers.
How to direct change in a complicated system
Prof. Hande is approaching these problems from two angles:
- Locating inadequacies in the current system by collecting data on who is providing home care services and on where funding falls short. Very little data currently exists because home care is largely unregulated. This makes it hard for the government to know how to respond appropriately.
- Building migrant justice and disability justice frameworks. Developed by immigrant workers and low-income home care recipient communities, these frameworks will help identify weaknesses and strengths in the current system, from the perspective of those who need change most.
“The project is really trying to use a community-based, community-driven process to ensure that people who are continually marginalized and silenced in home-care policymaking are actually putting forward principles, developed in their communities, to guide home care recommendations,” said Prof. Hande.
With the knowledge developed from this research project, Prof. Hande and her team hope to build a pilot home care model that shows what a system that meets the needs of immigrant home care workers and low-income disabled and older people would look like.
“It's easy for people to throw up their hands and say that this is an impossible situation. How could we ever change this system? But what we're excited about with this project, is that we're bringing the right people into conversation with each other and developing tools together that can guide a path to a better system.”
Prof. Hande plans to hire a Trent student to assist in conducting the research partnership with DJNO, representing a unique opportunity to work with community organizations and support community engaged research.