As Long-Term Care Falters Under Weight of COVID-19, Expanding Home Care Might Help Ease the Crisis
As our long-term care system struggles to protect older Canadians against COVID-19, some experts are suggesting it's time to focus on home care. Photo: Maskot/Getty Images
As a second-wave of the novel coronavirus that causes COVID-19 sweeps through long-term care facilities, it is once again exposing the alarming inability of our nursing, retirement and assisted living homes to effectively combat the deadly disease and protect vulnerable residents.
In response to this ongoing disaster in long-term care, and to prevent more tragedy, C.A.R.P. has launched a national campaign calling on the provinces to overhaul their long-term care system. C.A.R.P. recommends that health planners begin exploring solutions to the failures of institutional elder care. Building a system that cares for our elderly in their homes might be the best solution.
Researcher John Lord explains why a shift to home care is long overdue.
During this pandemic, it has become apparent that supports for our frail elders leave a lot to be desired.
We have all heard stories of understaffed nursing homes and the negative impact of segregating people in crowded long-term care facilities. These long-term care facilities have been a disaster during the pandemic, with people crowded into two, three and four person bedrooms.
The B.C. Office of the Seniors Advocate, in a Report called Every Voice Counts, surveyed nursing home residents and found that about 40 per cent of residents did not want to be there. As well, a recent Review of the Alberta Health Services showed that many people who are placed in long-term care do not have complex needs and could be better served in the community.
Similarly, the Canadian Institute for Health Information found that more than 22 per cent of Canadians in long-term care could easily remain in their own home with community support. Even before the pandemic, we knew there were many overcrowded hospitals with elderly patients who were waiting for supports to able to go home. It has also become clear during this pandemic that many of our elders are struggling with loneliness and social isolation.
There is an urgent need for home care reform to deal with an aging population and the increased demands that are being placed on nursing homes and community support systems. Toronto lawyer Marshall Swadron, recently quoted in Walrus Magazine, says that “the biggest indignity faced by many older people is losing the right to live independently in their home.”
When the pandemic winds down, it will be important to address the calls for enhanced home care in a way that brings more dignity and respect to the lives of the frail elderly and to the workers who tirelessly support them.
Home Care: Ignored and Underfunded
The reality is that Canada’s current home care system is grossly inadequate. Only 13 per cent of funding for our frail elders is for home care and community-based supports, while 87 per cent of government funds go to nursing homes. Some European countries, such as Denmark, fund mostly home care and community alternatives for frail elders with only 12 per cent of funds going to long term care institutions.
This Canadian under-funding of home care has led to far too many people being institutionalized in long term care homes. With more than 7 per cent of adults over age 65, this is one of the highest rates in the western world.
Many policy proposals on home care reform stress the need for easier access. There is also wide-spread agreement that home care in Canada is poorly designed and co-ordinated for the 21st Century. As C.A.R.P. has stressed, home care needs more flexibility, increased funding and improved respite care options. C.A.R.P.’s call for change is echoed by several other national and provincial groups representing older Canadians, including CanAge and Seniors for Social Action Ontario.
Dr. Samir Sinha, a leading Toronto gerontologist, says that enhanced home care will reduce the need for nursing homes at significant savings. He points out that it costs $183 per day to house a high-needs person in a long-term care home compared to just over $100 a day to provide home care. Rudy Friesen, a retired architect who has been involved in housing alternatives, has criticized our reliance on long-term care institutions and how we minimize our support and funding for community options, including home care. Friesen has likened our home care system to an assembly line, with clients often experiencing numerous staff at times that may be totally inconvenient.
The province of Ontario has recently passed legislation to “modernize home care.” The proposed framework guiding this legislation calls for significant changes to a system that currently has severe restrictions on the amount of service and provides few incentives for innovation.
Although there are some positive features, the legislation has been criticized for its reliance on for-profit providers and limited engagement of older adults in the process of change. Other provinces, such as British Columbia, have also made changes to home care that includes better collaboration with primary care.
Building a Better Home Care Model
Despite some positive change, we need to address the current limits in the way home care is implemented across Canada, and how a comprehensive home care system could more effectively support our elders. It is time for bold ideas.
The home care field does not have to look far to see creative approaches in Canada to providing innovative, personalized supports for vulnerable citizens. During the last thirty years, support systems designed for people with develop-mental disabilities and physical disabilities have been developing some very impactful approaches. Home care for frail older adults can learn a great deal from the experiences of community-based disability supports.
Innovative supports designed for people with disabilities, across Canada and around the world, are primarily guided by two principles, self-determination and community. These principles are the foundation for four main approaches that can contribute to reforming home care while expanding its capacity.
First, home care needs to remove hours of service maximums that people can access for support. The weekly maximum hours for home care vary widely across the country but are generally inadequate to support people with complex needs. As the Alliance for Self-Determination states, personal supports should be available for everyone who wants to remain in their own home, which could include up to 24- hour support. In this way, home care could be one viable alternative to institutionalization.
Provide Direct Funding
Second, home care needs to implement direct funding as an option for individuals and families. As an example, when my friend Lorna needed home care, she was offered 12 hours a week of support. Lorna hoped to hire Louise, a neighbour who was also a registered nurse and a friend. Lorna thought this made sense since she already had a good relationship with Louise. Also, Louise lived nearby, only worked part-time and could be flexible with her hours. Instead, Lorna was required to use a local for-profit agency, and had three different workers that she didn’t know, coming into her home each week.
Direct funding enables funds to go directly to the person and/or family, who can then manage the funds to hire workers of their choice. Research shows that this approach not only enhances self-determination but also expands the workforce by making more people available to assist vulnerable adults. The Ontario Ministry of Health recently started a small Family Managed Home Care Program that provides direct funding. This concept of self-directed funding is an important initiative that needs wide-spread expansion across Canada.
Address the Context
Third, home care reform needs more systematically to address the context in which people are living. Home care tends to be dominated by a “placement” model, where workers are placed in someone’s home for a certain number of hours per week. In some jurisdictions, little attention is paid to whether the person is socially isolated or lonely, even though these are increasingly important determinants of healthy aging and well-being.
As Montreal psychologist and journalist Susan Pinker found from extensive research, people’s health and well-being are significantly impacted by strong relationships and social networks. The world of disability supports has shown that attention to context and relationships can have a huge impact on well being. This is the principle of “community” in action. Imagine if every home care system enabled isolated, vulnerable people to build stronger connections and sense of community with neighbours, friends, and family. As Pinker points out, this is the power of the “village effect.”
Improve Supportive Assistance
Fourth, enhanced home care needs to provide supportive assistance that will assist people and families to develop a holistic approach to their situation, including planning, hiring workers, managing funds, and network development. This can happen in two ways, either through independent facilitators or through enhanced case management. Some provinces, including Ontario, British Columbia, and New Brunswick already have well-trained facilitators working with people with disabilities. These infrastructure supports, such as the Ontario Independent Facilitation Network, could be called on to play a significant role in this enhanced home care system.
In addition, case management within home care will need to be enhanced and include a “facilitation” role. Innovative disability support systems have shown that when facilitators are guided by self-determination and community, they build resilience and capacity in individuals and families. This is consistent with the resilience research of Michael Ungar at Dalhousie University, who has shown that resilience is enhanced by meaningful relationships and by the right supports at the right time. The facilitation role is increasingly becoming an important enabler of health and well-being for vulnerable adults.
Time for Bold Action
While innovative and effective home care is available in selected regions across Canada, it is time for a country-wide approach that highlights the principles of self-determination and community.
With the demands for home care expected to double in the next 20 years, it is time for bold action, that includes significant new funding and decent wages for workers. Reformed home care would also stress relationships and the need for effective formal and informal supports.
As well, direct funding would enable far more Canadians to remain in their own homes and have control over the supports they receive. To make this happen, home care leaders and policy makers can learn from innovative disability supports across Canada.
They should also be inspired by the need for change that has become apparent during this pandemic.
John Lord, an Order of Canada recipient, is a researcher and author living in Kitchener-Waterloo, Ont. Previously, he was the founder of the Centre for Community Based Research and a leader with the Facilitation Leadership Group. His books include Pathways to Inclusion and Facilitating an Everyday Life. John’s website is www.johnlord.net