Caregivers provide unpaid care to their family, friends and neighbours of any age who have physical and/or mental health care needs. Many reports have identified the importance of caregivers, the need to support them, and the challenges they face. Although Ontario is fortunate to have many valuable organizations that help support caregivers, they still face challenges finding and accessing appropriate information and supports.

In early 2017, the Minister of Health and Long-Term Care, Dr. Eric Hoskins, asked me to inform next steps   in coordinating and strengthening caregiver supports. This included whether a new provincial caregiver organization could serve Ontario caregivers and, if so, to recommend an organizational structure that would complement and leverage the capacity and expertise of organizations that already help support caregivers. Expanding caregiver support is one of the ten steps in the Ministry of Health and Long-Term Care’s “Roadmap to Strengthen Home and Community Care“.

My observations and recommendations are based on listening to over 200 caregivers, representatives of home and community care organizations, and caregiver support organizations in other jurisdictions, and reviewing relevant documents. My advice and three recommendations take the caregiver’s perspective, and are based on my firm belief that Ontario needs to invest in supporting its caregivers, and that a made-in-Ontario approach would be welcomed and highly beneficial.

There was widespread agreement during the consultations that effective caregiver support must include initiatives at the individual, organizational and system levels. My first recommendation is to develop caregiver support initiatives at each of these three levels:

  • Individual level supports should include one access point where caregivers can receive information and be connected to available services and supports.
  • Organizational level supports should identify caregiver support gaps within and between the Local Health Integration Networks (LHINs) – as well as among organizations that support caregivers – and advise on opportunities to address gaps, standardize services, make better use of collective resources, expand excellent programs, and improve equitable access to supports.
  • System level supports should include public education and awareness programs about the value, importance and challenges of caregiving; increased knowledge of health care and other service providers (such as EMS  and police) about the role and value of engaging caregivers; opportunities to improve and align caregiver support policies and legislation at the municipal, provincial and federal levels; and opportunities for caregiver and best practices research.

Over the course of the consultations, there was agreement that, currently, Ontario does not have an organization or entity that: focuses solely on caregivers and their multiple diverse needs; reflects the broad culture of caregiving as opposed to caregiving within a focused area(s); and can deliver and coordinate the full range of individual, organizational and system level caregiver supports. There was widespread support from caregivers  for the creation of an organization dedicated to meeting their broad needs. After carefully considering various options, my second recommendation is the establishment of a stand-alone caregiver support organization to deliver and coordinate the full range of supports to caregivers. Key characteristics include:

  • A volunteer Board of Directors.
  • A staff secretariat at a central location and at regional locations – strengthened by local volunteer networks – aligned with, co-located within, and arms-length from the LHINs.
  • Staff accountability to a CEO and organizational accountability to the Minister of Health and Long-Term Care or their designate.
  • Non-profit charitable status with multi-year government funding.
  • Accountability  for  performance.
  • Continuous evaluation and refinement as the health care system evolves.

Initiatives need to be sensitive to the fact that each caregiver brings their own experiences – which are influenced by culture, language, age and other factors – and which evolve over time. The consultations highlighted the need to recognize and provide caregiver supports to our French Language caregivers in French. In addition, the consultations stressed the importance of co-designing and co-developing supports with and  for our Indigenous Peoples, as well as working with the LGBTQ community to further understand and develop appropriate caregiver supports.

In addition, it will be important to respect the critical role played by existing organizations that have a strong track record supporting care recipients and caregivers. Their input has been invaluable and, going forward, we need to draw on their experience and expertise, and leave room for their continued support to caregivers.

My third recommendation is the appointment of an Implementation Lead in the short term to begin this important work. This tangible commitment to implement is crucial.

These recommendations support Ontario’s “Patients First” commitment which puts people and patients at the centre of the care experience. The contribution and value of caregiving are significant and growing. Caregivers augment our taxpayer-funded services, are an intrinsic part of our health care system, and contribute significantly to the health and well-being of Ontarians. I strongly believe that these recommendations will benefit caregivers, improve the caregiving experience, and enable them to continue their important work.