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In our 2011 report, Winning Conditions to Improve Health Care, we predicted that it was “likely that some reorganization of LHINs and CCACs <would> occur.” From our perspective, we believed that reorganization would be “a huge opportunity to better align decisions and resources with priorities and purpose.”
This opportunity is now here. As of June 21, 2017, the CCACs have merged with the LHINs across Ontario. Although we all agree that change was and is needed to integrate care and improve patient and caregiver outcomes and experiences, we also know that structural changes alone won’t do the job. Ontario needs a fundamental shift to embrace patients and caregivers as partners in healthcare. Merging organizations is just a small piece of the puzzle.
Around the time that the LHINs were created in 2006, The Change Foundation looked at how integration was being done around the world. That research helped us identify key elements that are critical for integrated care. We have highlighted those elements in our work over the past few years. They are:
In our view, many of these foundational elements still need development in Ontario. The goal of an integrated system of care, which will lead to improved outcomes and better patient and caregiver experiences, doesn’t come about without a wholistic approach to change.
Take the Partners Advancing Transitions in Healthcare (PATH) project in Northumberland, as an example. PATH was a partnership between patients, caregivers and 12 cross-sector health care organizations in Cobourg. By co-designing the approach to care, based on patient and caregiver experience and input, they designed changes to improve people’s experience moving within and across health care organizations in each patient’s healthcare journey. There was a notable cultural shift in Northumberland—within health care organizations and the community—that is still evident today.
More recently, as part of our Changing CARE initiative, the Change Foundation is collaborating with four partnerships in Ontario that will change the way care organizations, providers, caregivers and patients work together. This shift will be achieved by developing programs and resources that address four areas of caregiver needs—Communications, Assessment, Recognition and Education—identified through extensive engagement and partnership with caregivers and providers. Most importantly, each of the Changing CARE partnerships demonstrated a true commitment to co-design with caregivers, and a passion and dedication to make meaningful change. They ‘get’ it. Yes, a structural change will be part of their implementation, but it won’t be the driver of the needed cultural shift.
When we look across the system, we are encouraged by the more prominent role that caregivers are playing in Ontario’s health care landscape today compared to 2006. As we said in Winning Conditions, “To accomplish [an integrated health system], we need to seek and be guided by the lived and expressed experience of the people now navigating the health care system.”
Although there is work to do to get more of the fundamental pieces in place to support caregivers within the system, we have begun tapping into their expertise. As the positive momentum continues, we are hopeful that the recognition and awareness of the role of caregivers will continue to grow among Ontario health care organizations and providers. It is only when patients and caregivers are true partners that we’ll be able to achieve true integration.
In January, February and March, The Change Foundation team had the privilege of traveling across Ontario to launch the Foundation’s four Changing CARE partnerships. Each launch event was an excellent showcase for each partnership, bringing together the family caregivers, patients, providers, and other community stakeholders that will be part of this initiative. At every stop we’re asked “Why here? Why this project?”
In some ways this is an easy question. All four partnerships had common key characteristics:
It’s this last point that has become increasingly important to the Changing CARE initiative. Caregiving is not a role that only exists within the confines of a hospital or doctor’s office. Providing support and care, of any kind, requires caregivers to piece together services and resources from organizations that exist across the continuum of care and deep into the community. To connect with caregivers on a meaningful level, it is imperative that we understand and link together the networks they are likely to use.
Each Changing CARE partnership has already reached out to a broader community network in one way or another.
However, this kind of local, grassroots work is not always an easy task. The silos that can exist between health care and community care services can be a barrier to collaboration. But identifying common bonds and groups of stakeholders can be one solution. For the four Changing CARE partnerships, linking already existing networks of services was a key realization of a stronger together mentality on a local level.
This work is merely beginning. The next step for our Changing CARE partnerships will be to leverage these combined networks to reach local family caregivers and invite them to collaborate and co-design supports/resources that work for them.
The potential for these projects, however, is exponential.
Finding new solutions to address caregiver issues, we need a diverse group of people and organizations with a holistic, community-based vision. Through Changing CARE, we’ll encourage and foster these new linkages for the benefit of all Ontarians.
Today The Change Foundation is excited to announce four community partnerships poised to make positive impacts on the experience and interaction family caregivers have with Ontario’s health care system.
Through Changing CARE, partnerships in London, Huron and Perth counties, Cornwall and Toronto will develop local supports, programs, and/or resources that address four thematic needs identified by caregivers and health providers: communication, assessment, recognition, and education.
“These four partnerships truly understand the needs of caregivers in Ontario today,” said Change Foundation President and CEO Cathy Fooks, “Each showed an astounding commitment and willingness to co-design new strategies, practices and initiatives with caregivers for the benefit of Ontarians.”
Each partnership was developed with caregivers in key design and decision-making roles, which will continue throughout the partnership. The partnerships are also intently community driven and engage a variety of organizations across health care settings and community services.
The partnerships moving ahead under Changing CARE bring important focus to different facets of the caregiver experience from a multitude of perspectives including different care settings, demographics, and geographic locations.
Changing CARE will consist of the following partnerships:
Partner Organizations: Huron Perth Healthcare Alliance; One Care Home and Community Support Services; North Perth Family Health Team; STAR Family Health Team; South West Community Care Access Centre; Southwest Local Health Integration Network
Location: Huron County and Perth counties, Ont.
This partnership is focused on addressing the needs of family caregivers through defining and recognizing their role, and co-designing systems of care provision and communication that meet caregiver needs. Read our overview about family caregivers or click here for more details about our report.
Partner Organizations: The Cornwall & District Family Support Group; Cornwall Hospital, Community Addiction and Mental Health Services
Location: Cornwall, Ont.
Through several new work streams, this partnership will develop practices with family caregivers to better support, recognize, and embrace their vital role in the recovery of their family and/or friend with addiction and mental health issues. Click here for more.
Partner Organization: St. Joseph’s Health Care London
Location: London, Ont.
St. Joseph’s Health Care London will build on past learning and successes to further strengthen family caregiver partnerships in all its programs and services. This partnership will feature a number of activities and mechanisms designed to make impacts across the organization, including, communication resource toolkits, formal caregiver assessments and new education and support initiatives. Click here for more.
Partner Organizations: Sinai Health System and WoodGreen Community Services
Location: Toronto, Ont.
Sinai Health System and WoodGreen Community Services are proudly partnering with family caregivers to fundamentally redesign the caregiver experience using the concept of the Caregiver Friendly Hospital and Community Hub. Click here for more.
Changing CARE partnerships will each receive a maximum of $750,000 per year for the next three years from The Change Foundation.
Starting in late January, four regional launch events will take place to celebrate and showcase each Changing CARE project.
For more information, please visit www.changefoundation.ca/changing-care.
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Harpreet Bassi, Executive Lead, Program Implementation at firstname.lastname@example.org.
Christa Haanstra, Executive Lead, Strategic Communications
It was on the train back to London from Hertfordshire when the enormity of just how much leadership, collaboration and focus is needed to make positive changes for caregivers in Ontario registered.
Throughout my work with The Change Foundation, I’ve been lucky to be a part of numerous caregiver engagement activities. In these settings, I’ve heard many caregivers share their experiences in Ontario’s health care system. It should come as no surprise that what made the difference in each story was the level of support and recognition a caregiver received. Sometimes it was as small as simply being asked how they were doing. Other times, it was as significant as peer support groups or formal counselling.
So this past October, as Cathy Fooks and I met with various caregiver organizations in the United Kingdom, it underscored for me just how far we have to go in Ontario to better recognize and empower caregivers.
Luckily for us, organizations we visited in the UK provided shining examples of the innovative and simple things that can be done to better support caregivers.
In the UK, the role of the caregiver has been in the national consciousness since the 1960s, evidenced by the large number of organizations and programs providing care for caregivers today. It was this critical mass of caregiver organizations that gained the attention of the lawmakers, culminating with the introduction of the Carers Act, 2014. This combination of grassroots efforts with formal recognition, such as legislation, has positioned the UK as a leader in supporting caregivers.
This long history is also reflected in the types of comprehensive regional programs that exist. For example, we had the privilege of visiting Carers in Herts, a leading regional organization working to erase the barriers that stand between caregivers and the support they need. Their passion, commitment and entrepreneurial spirit was evident every step of our visit.
Supporting a region of 1.25 million people, Carers in Herts provides carer information, advocacy, education and planning support. Their unique Carers Passport program has leveraged a creative partnership with the local library and local businesses and other services across Hertfordshire to provide rewards such as discounts to area caregivers. Seen as a kind of Certificate of Appreciation, the passports are a catalyst that connects Carers in Herts with caregivers to get them the support they need.
Another outstanding program administered by Carers in Herts was their Make a Difference for Carers grant—a one-time sum of up to £500 for an individual caregiver’s positive health and wellness. The grant is designed to go towards an investment that best serves the caregiver’s unique needs as determined by an assessment with the caregiver. From a trip away for respite time, to an investment in a computer to facilitate new connections with other caregivers online, this small investment can have a huge impact on an individual’s life.
While Carers in Herts provided rich insight regionally, we were also impressed by Carers UK’s caregiver advocacy work nationally—in particular the Employers for Carers program. Through this program, Carers UK helps develop a work setting whereby any caregiver can self-identity to their employer and discuss what accommodations they may require, from flexible hours to additional time away. Although each caregiver-friendly workplace is unique, Carers UK typically follows a disability-friendly or mental health-friendly workplaces model.
Though many leaders I met were shocked at how little is being done in Ontario for caregivers, they also were quick to point to the issues facing caregivers in the UK. Many were all too familiar: perceived vs. real barriers to privacy; difficulty engaging health providers, the lack of caregiver self-identification; and the inconsistency in program implementation across regions. Despite the achievements in legislation and recognition, supporting the needs of caregivers is always a work in progress.
On the flight home, I took a moment to reflect on what we had seen. Though organizations like Carers in Herts emphasized just how far we have to go to in Ontario, the trip also renewed the Foundation’s drive to work with Ontario’s caregivers and providers.
The UK has provided the vision we see for Ontario. Now let’s make it happen.
Over 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.
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.
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