changing care

Action through policy: Legislation supporting family caregivers

Cayla Baarda

family caregiver legislationOver the last few years, governments around the world have started taking action to improve legislative and policy supports for caregivers. As part of our research and discovery work, The Change Foundation took a closer look at some of the recent changes in legislation and policy worldwide. Although we found promising policy developments in many jurisdictions, there were three recent changes gaining momentum in the U.S., Canada, and Scotland which were the most relevant for our work, which are summarized below.

The United States: Caregiver Advise, Record, Enable (CARE) Act

In 2014, Oklahoma enacted the Caregiver Advise, Record, Enable (C.A.R.E.) Act, an interesting approach to recognizing the caregiver as part of the care team. The Act requires hospitals and rehabilitation facilities to allow patients to designate a caregiver when the patient is admitted, and hospitals must inform the designated caregiver when a patient is being discharged. As part of the discharge process, hospitals must also consult with the caregiver to describe the patient’s aftercare requirements.  Within the past two years, 21 more states have signed the C.A.R.E. Act into law, six states have passed the bill, and four states have introduced the bill into the legislature, signaling strong support for its measures nationwide.

Canada: Enhancing Support for Working Caregivers

In early 2016, the Canadian Federal Government announced a significant expansion of compassionate care benefits from six weeks to 26 weeks. Compassionate care benefits are Employment Insurance (EI) benefits paid to people who have to be away from work temporarily to provide care or support to a family member who is gravely ill. The policy change signaled an intention to alleviate the financial burden of taking time off work to provide care or support to family and friends.

Shortly after the announcement, Nova Scotia became the first Canadian province to more than double compassionate care leave from eight weeks to 28 weeks. Compassionate care leave is unpaid leave to provide care or support to a gravely ill family member. Several provinces have followed Nova Scotia’s lead, with Manitoba and New Brunswick already implementing 28 week leave, and Saskatchewan expected to extend their policy by early 2017.

Scotland: Supporting Caregivers’ Health and Well-being

As part of the Scottish Government’s vision of healthier and fairer Scotland, Scotland’s Carer’s Act came into force in 2016. Following the momentum of England’s noteworthy Care Act 2014, the Act will formally give caregivers rights in law for the first time in Scotland. The Act includes provisions for local authorities to involve caregivers in the planning of service delivery, create specific support plans for both adult and young carers, and create an information and advice service for local carers to access. As part of the legislation, carers have expanded rights and control over their health care and that of the person they care for.

Though only three examples among many, these policy development help to illustrate the larger momentum shift towards better supporting family caregivers.

The Change Foundation plans build and drive this moment in Ontario through our Changing CARE initiative which will invest in innovative projects designed to improve the experience of caregivers in Ontario. As we do so, we will continue to track developments in in other jurisdictions as they develop new policies, programs, legislation, and supports that recognize and support caregivers.

To read more about legislation, policies, and programs supporting family caregivers, visit The Change Foundation’s Family Caregiver Overview or Caregiver Resource Hub here.

Cayla Baarda is Research Associate in the City of Toronto’s Urban Fellows Program and holds a Masters in Public Policy from the School of Public Policy and Governance at the University of Toronto. She was hired as a Research Assistant at the Foundation during the summer of 2016.

Partnering with family caregivers essential to Changing CARE

Changing CARE is aimed at addressing caregiver communication, assessment, recognition, and education.

Cathy Fooks, President and CEO

In August, we announced details on our new funding initiative, Changing CARE. Since then, we’ve seen an overwhelming response from every corner of the Ontario health care environment. This is evidenced by the nearly 400 participants in our Changing CARE webinars throughout August and September, and the 70 Expressions of Interest submissions we received last week. Furthermore, this response underscores the fact that family caregivers are being increasingly seen as essential health care stakeholders who have a role and need support.

What we found interesting through our engagement work, however, was the common feeling of helplessness from both caregivers and health care providers. Caregivers often said they didn’t know where to go for information and support and health care providers often said they didn’t know where to send them. Changing CARE aims to change this dynamic as well as others.

As a start, we’ve published a number of key reports that are meant to be resources for the field. This includes A Profile of Family Caregivers in Ontario, our Caregiver Resource Hub, and our Stories Shared, Voices Heard reports which outline findings from both our caregiver and health provider consultations gathered during The Caring Experience Project. These resources on our website provide a concrete starting point for anyone looking to improve the family caregiver experience.

It’s well known that caregiver burden is a real issue facing Ontario and that distress levels are rising. This needs to change.

Through our work leading up to Changing CARE, we discovered four broad themes that caregivers experience – challenges related to communication, recognition, assessment, and education.

We’ll be funding up to three projects in support of innovative ideas to improve the caregiver experience. Future system transformation is clearly predicated on families providing support in all aspects of patient care – if we don’t start building system capacity to partner with them now, no one will be well served. Not patients. Not families. Not providers.

Be part of Changing CARE! Expression of Interest materials now available

Changing CARE
Changing CARE is The Change Foundation’s latest funding initiative for health care delivery/service providers.

Are you part of an Ontario health care delivery/service organization that wants to improve the health system for patients and families?

Is there an opportunity in your community that could have huge impacts for Ontario’s health quality?

Interested in working with local family caregivers and community partners to make it happen?

If you answered yes to these questions, then The Change Foundation wants to hear from you!

Expression of Interest materials are now available for Changing CARE—our new funding initiative for Ontario health care delivery/service organizations who want to partner with family caregivers to develop innovations that will improve the caregiver experience in Ontario’s health and community care systems.

Today also marks the launch of our latest report, Out of the Shadows and Into the Circle: From Listening and Learning to Action, a summary of key research and engagement work completed by The Change Foundation in 2015-16.

“After a year of dedicated work with Ontario’s caregivers, we’re ready to take action with Ontario health providers,” said Change Foundation President and CEO Cathy Fooks. “Changing CARE will create new and innovative partnerships between health care deliver organizations and caregivers to improve Ontario’s health and community care systems.”

Through Changing CARE, The Change Foundation will fund up to three projects from health care delivery or service organizations in Ontario. Projects will receive initial funding of up to $75,000 for the first four months, and $750,000 to $1,000,000 (amount subject to The Change Foundation’s Board Approval) in each of the next three subsequent years, through to fiscal year 2019-2020.

For those organizations interested in submitting an expression of interest, four informational webinars will be held on August 23, August 29, September 7, and September 14. All webinars will cover the same information in regards to Changing CARE themes, processes, and criteria.

Further details on Changing CARE and Out of the Shadows and Into the Circle: From Listening and Learning to Action can be found at the Foundation’s website:


For more information, please contact:

Genevieve Obarski, Executive Lead, Program Implementation, at 416-205-1564 or

Out of the Shadows and Into the Circle: From Listening and Learning to Action

In April 2015, The Change Foundation launched our 2015-2020 strategic plan. In that document, we knew that the experience of family caregivers is inextricably linked to the experience of the people they are caring for. However, we knew we needed to know more in order to fully understand the breadth and depth of the family caregiver experience in Ontario.

Out of the Shadows and Into the Circle: From Listening and Learning to Action details The Change Foundation’s listening and learning process throughout 2015-16. It provides an overview of what we heard from Ontario’s family caregivers and health providers through various research and engagement activities. The report also outlines the direction and next steps that will be taken as we enter the “incubate and innovate” phase of our strategic plan.

Specifically, the report gives a deeper outline of the four thematic challenges outlined by family caregivers:

Recognition of the family caregiver role and responsibilities

Recognition of the caregiving role needs to be acknowledged by both caregivers themselves and by the patient’s health care team. Our contention is that caregivers need to be a member of the health care team – valued and respected for their role in the patient’s journey.

Communication between caregivers and system providers

There is often a lack of information and communication with caregivers about what to expect regarding the patient’s condition—from the anticipated care trajectory to the expectations inherent in a caregiving role.

Family caregiver identification and assessment of caregiver needs

Currently, there is little assessment of the abilities family caregivers have and what resources they might need once their caregiving role begins. To compound that, ongoing check-ins with caregivers to assess their needs or physical/emotional state rarely happens.

Support, training and education for caregivers

Caregivers want and need support, education, and skills training to help them in their role. Simply needing “a break” was top of mind, yet many caregivers and providers struggle to find programs and resources to make this happen.


These four themes from the report serve as the basis for Changing CARE, The Change Foundation’s funding initiative for Ontario health care delivery/service organizations.

Download the report in its entirety below.

Report and Related Resources

For more information, please contact:

Communications at



Emerging Themes for Change

Lori Hale, Executive Lead, Research and Policy and Stephanie Hylmar, Research Associate

TCExperience_Identity_Clean-FA-med3.3 million people in Ontario identify as family caregivers (The Change Foundation, 2016). These individuals provide critical and ongoing support or care to a family member, friend or neighbour. As an essential part of our health and community care systems, family caregivers often have extensive knowledge about health care from their experiences navigating the system alongside the patient.

As a result, family caregivers can provide unique insight on how to meaningfully improve Ontario’s health care system.

The Change Foundation has heard directly from family caregivers and frontline health providers through in-depth engagement activities as part of our strategic plan and The Caring Experience project. We asked both groups about their interactions with each other across health care settings—What got in the way?  What went well? What could make it better?

Through this process, we were able to identify four overlapping emerging themes that serve as a starting point for increased stakeholder discussion, consideration and action:

 1) Recognition of family caregiver role and responsibilities

At the outset, family caregivers don’t recognise themselves as a “family caregiver.” They are just family stepping up to look after a loved one. As they begin their task, they begin to realise there is a role and it’s an important one.

Many family caregivers said they were often looking for basic kindness, respect and acknowledgement from the health providers looking after their family member. Family caregivers want to be seen as a valuable member of the care team able to offer vital information for care planning.

For their part, providers did recognize the important role family caregivers play in the care of their patients, yet they often felt ill-equipped to provide adequate support and were unaware of what supports might be available in the community.

2) Family caregiver assessment and identification

Identifying the main family caregiver for a patient can sometimes be challenging. In times of illness many family and friends rally to the patient’s side, but identifying who will be the primary support is not always easy. Once identified there is seldom much opportunity to sit down and assess what the caregiver will need to fulfil their new role.  Providers pointed to this challenge repeatedly in our engagement with them. For family caregivers, this lack of identification and assessment meant they constantly had to stake a claim for information and other needs.

3) Better communication between caregivers and system providers

Communication between family caregivers and providers across health care settings was a major and overlapping theme. Serious challenges were identified by family caregivers in terms of lack of information and difficulty in navigating a large and multi-faceted health system. Providers remarked that system and funding barriers also hampered communication, not only with family caregivers, but with fellow providers. In every engagement session, communication ran through discussions and various reflections as a common thread and was identified by participants as an area for immediate action.

4) Improved Health and Community Care Supports

Lastly, both family caregivers and providers recognize the need for better supports such as skills training, coping mechanisms, and respite. Simply needing “a break” was top of mind for many family caregivers, as was a request to have contact with consistent home care staff. Providers also recognized that transitions between care settings could be unorganized causing problems and frustration, signalling another area for increased support and communication.

At The Change Foundation, we’ll continue to engage with all health care stakeholders to evolve our system. Over the summer we are developing new funding opportunities and partnerships for organizations interested in working differently with family members to improve the patient and caregiver experience. We are excited to see where patients, families, and providers can work together to make change happen.



Herklots, H. (April 27 2016). Caregivers: Lessons from the UK, Opportunities for Ontario (presentation). Toronto, ON Canada.

Torjman, S. (2015). Policies in Support of Caregivers. Renewing Canada’s Social Architecture.

The Change Foundation. 2016.  A Profile of Family Caregivers in Ontario.


Created in partnership with our #ChaningCARE teams, register to complete this 3-part eLearning module to learn through tips and examples how as healthcare providers you can help improve the experience of family caregivers.