Op-ed: Caregiver Recognition Act falls through cracks
The following is an op-ed written by Laura Funk, an associate professor, and Kaitlyn Obedzinski, a PhD student, in the department of sociology and criminology. It was originally published in the Winnipeg Free Press on Mar. 26, 2019.
Tuesday, April 2 is Caregiver Recognition Day in Manitoba. The work of family caregivers is often invisible to health and social care systems. Although the provincial government began to legislate support for them in 2011, the momentum now seems to have been lost, leaving caregivers to continue to toil relatively unseen and unhelped.
What are the possibilities for reviving the act within our current government, as it embarks on implementing large-scale system transformation?
Caregiving is helping your family member with a disability or illness to get dressed and washed in the mornings, driving them to and from appointments and being on call around the clock. It is protecting good relationships with paid care providers while advocating to ensure your family member receives safe and appropriate services.
It is learning how to navigate complex care systems and innumerable gatekeepers, application forms and phone calls. Research shows family caregiving can negatively affect the personal finances, well-being and social relationships of caregivers, especially among those providing intensive levels of care. Caregivers, so ensnared by stress, may not even recognize their own needs for support.
To counter the public invisibility of family-care work and better support caregivers, the U.K. and Australia developed national caregiver acts, heralded internationally as innovative and progressive precedents. Modelled in part on these acts, in 2011, Manitoba’s leaders passed the Caregiver Recognition Act (Bill 42). This was an exciting time, as many people (including ourselves) hoped the act might improve everyday situations and circumstances faced by caregivers. Ontario appears to be following suit with a similar act in legislative process.
Manitoba’s act was intended to promote awareness of caregivers and inform “a framework for caregiver recognition and caregiver support.” But a policy framework did not develop, and findings from Manitoba’s caregiver consultations (designed to inform the act’s implementation) were posted quietly online, yet never formally publicly released or discussed. One of us (Funk) wrote the consultation report — and was told not to use the phrase “recommendations” — only “points of note,” “opportunities” or “possibilities.”
It was also unclear whether the act’s principles apply to all government departments and agencies or only those “responsible for the development, implementation, provision or evaluation of caregiver supports.” Yet services with fundamental effects on a family caregiver’s well-being — home-care services for older adults, for instance — are not normally defined within policy as caregiver supports.
With little indication of who is responsible for maintaining the act, and no money behind it, it is easy to see how it has fallen by the wayside. After some Caregiver Recognition Day events, the act, and its associated sense of magic, has fizzled. Although recognition, alone, is never enough, the act could have been (and we like to think, could still be) much more than a pat on the back for caregivers.
For instance, the act promotes acknowledging caregivers as individuals with their own needs; adopting caregiver needs assessments in home care is a promising practice implemented in some regions.
In addition, supporting caregivers’ economic well-being (another principle of the act) could suggest moving beyond annual caregiver tax credits toward a more substantial monthly caregiver benefit, extending the approach currently adopted in Nova Scotia and New Brunswick.
The fizzling of the act seems significant when considered alongside recent decisions to cease the Caregiver Advisory Committee, as well as the branch that was instrumental in developing the act (seniors and healthy aging). This approach is in stark contrast to Quebec, where a minister for seniors and family caregivers was recently established.
Is the act even being used? In response to a query, the seniors and healthy aging branch told us that “recognizing caregivers through legislation is only one aspect of supporting caregivers. The provision of services that are efficient and responsive to the patient and their family is highly important.”
It is assumed, in other words, that Manitoba’s health system transformation will benefit families and caregivers. We would not initially disagree with this, though it evades the issue of how the act has been, or will be used, to better support caregivers. Notably, some key reports supporting health system transformation (e.g., Peachey report, KPMG’s health care report) do not discuss caregivers’ needs or refer to the act.
For a health-system transformation that recognizes and supports family caregivers, they need to be actively and meaningfully involved in policy redesign processes and system governance. Although citizen engagement is a stated pillar of the transformation, there is little information available about this process to know whether such engagement has been a priority in practice.
Under the right leadership, the Caregiver Recognition Act still has considerable untapped potential to develop caregiver-friendly policies and practices throughout Manitoba. Will the current government use it to inform health system transformation? Or will it remain an illusion?
I think there were very good intentions in the creation of this Act as there are a significant number of caregivers in Manitoba, and throughout Canada, who are acting as primary caregivers out of choice or necessity. Being an unpaid caregiver stresses one’s bank account, patience, health, job security, relationships, etc. It also saves the provincial governments a lot of money that should be directed towards significantly supporting the legion of caregivers be it in the form of respite care options, regular breaks in caregiving and many more supports. I have read that nationally, caregivers save the government more than $18 Billion dollars.
Of particular note, a similar discard has happened with respects to the 2014 creation of the Framework for Alzheimer’s disease and other dementias which emphasized the deficits in training of physicians through to health care providers (caregivers included), lack of Home Care options for dementia suffers, and many more valuable and badly needed resources for those with dementia. I have asked but received no replies to where this Framework is now – if anyone has any ideas, please let me know.