caregivers

Moving beyond caregiver recognition

In April, the spotlight was shining on family caregivers more than ever before. April 4 was Family Caregiver Day and a number of appreciation events were held to recognize the vital role families play in caring for a family member, friend or neighbour. In fact, for the first time ever, this day was recognized at the national, provincial and municipal level. Later in the month, the Ontario government announced new supports for family caregivers through increased funding for respite services, more education and training programs for family caregivers, a new Ontario tax credit, as well as the creation of a new organization to coordinate supports and resources for caregivers.

These initiatives are definitely welcome. They represent a step forward in recognizing this vital role, giving caregivers a bit more time away from their caregiver responsibilities, and providing needed and necessary information and training. 

But, is it enough? We don’t think so. Our direct engagement with family caregivers, and health care providers and staff tell us a more fundamental shift in thinking is required. Caregivers spend a lot of their caregiving time interacting with the health care system on behalf of their family member. Whether it’s chasing down information, coordinating appointments, or trying to convey vital information about the patient or the patient’s wishes, it can be time-consuming, frustrating and stressful. More access to respite or offering of education to caregivers, while important, does not change the fact that the system itself does not, by and large, value or acknowledge the caregiver role. Policies and practices in health care organizations often actually preclude caregiver involvement in patient care planning. To add insult to injury, busy staff often make assumptions about a family’s capacity to provide support without having a discussion with the caregiver to assess their willingness, ability and availability. And the evidence shows, when caregivers are not valued and supported, they burn out, become isolated, or they themselves become ill.

We are setting out to see if things can be done differently–we believe they can. Our Changing CARE work intends to do just that–change care and the caring experience for the caregiver. Since late January, we’ve announced four Changing CARE projects:

Connecting the Dots…Smoothing Transitions for Family Caregivers (Huron and Perth counties)

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

 Embrace (Cornwall)

Partner Organizations: The Cornwall & District Family Support Group; Cornwall Hospital, Community Addiction and Mental Health Services

 Improving CARE Together (London)

Partner Organization: St. Joseph’s Health Care London 

Cultivating Change: The Caregiver Friendly Hospital and Community (Toronto)

Partner Organizations: Sinai Health System and WoodGreen Community Services

Through these projects, we are working directly with eleven partner organizations, but the reach is much broader when we look at all the collaborative work planned as part of each project. You can read more about the projects, and what they hope to achieve in the coming years, in Genevieve Obarski’s article Creating New Linkages

April was also a busy month at The Change Foundation, as we welcomed Jodeme Goldhar, Executive Lead, Strategy and Innovation to our small but mighty team. In this role Jodeme will focus on expanding the Foundation’s international and national profile, as well as linking strategy to the execution of the Foundation’s projects. Stay tuned for her reflections on her trip abroad meeting with international colleagues, in our next issue of Top of Mind. 

As always, I’m excited to continue to share the Foundation’s activities with you and I sincerely hope you’ll continue to engage with us on this important shift in the health care system. A shift to recognizing family caregivers, and supporting them in the important role they play as key partners in our health care system.

Announcing four partnerships ready to start Changing CARE

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:

Connecting the Dots…Smoothing Transitions for Family Caregivers>

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.

Embrace

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.

Improving CARE Together

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.

Cultivating Change: The Caregiver Friendly Hospital and Community Hub

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.

 


For media inquiries, please contact:

Communications at info@changefoundation.com

 

For program information, please contact:

Harpreet Bassi, Executive Lead, Program Implementation at hbassi@changefoundation.com.

 

Insight and innovation in the UK

Christa Haanstra, Executive Lead, Strategic Communications 

Top insights from the Foundation's UK tourIt 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.

christa-cathy-nicci
Christa Haanstra (left) and Cathy Fooks (right) with John’s Campaign Founder Nicci Gerrard (centre).

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.

 

 

Changing CARE—Our time for action

CFooks 2We listened. We heard. Now it’s time for action.

That’s been our mantra for just over a month now with the launch of our new funding initiative, Changing CARE. We’ve done the legwork, and we’re ready to take action in Ontario’s health and community care sectors.

This past week was our deadline for Expression of Interest submissions for those organizations interested in being part of Changing CARE. We had over 400 people tune in to one of four webinars and have now received over 70 Expression of Interest (EOI) submissions as a result—now it’s on to the review process.  We heard from all parts of the system – family health teams, hospitals, LHINs and CCACs, and home and community care service agencies.

Similar to the PATH project before it, Changing CARE will bring family caregivers and providers together to spearhead innovative solutions that aim to improve family caregiver experiences in Ontario’s health and community care sector.

It’s on this note that our Top of Mind commentary piece makes a concerted call for better coordination of the various efforts being pioneered across Ontario aimed at family caregivers. At the Foundation, we’ve put a lot of work into better understanding the caregiver experience from the perspectives of caregivers themselves but also from front line staff and health care professionals.

Innovation, however, also needs to exist in policy and legislation, both in health care and in other environments. So, what action is being taken to support family caregivers on a policy front more broadly? To answer this question, we had Cayla Baarda, a Research Associate in the City of Toronto’s Urban Fellows Program and the Foundation’s summer Research Assistant, highlight three key legislative developments aimed at family caregivers.

Lastly, we also had the immense pleasure of providing eight young carers from the Niagara Region the opportunity to share their own caregiving stories in video format through a digital storytelling workshop. In the end, six decided to share their videos more widely and one of these young carers, 17-year-old Olivia Wyatt, is the focus of our latest caregiver feature written by Program Associate Catherine Monk-Saigal.

Stories like Olivia’s need to continue to be at the centre of any change in Ontario, especially as the health care system enters a period of flux. It’s also important to keep ourselves open to the new opportunities that might arise during this period and be willing to take actions that can lead to positive change.

As we launch Changing CARE, our plan is to do just that.

Be Engaged.

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