Long-Range Scenario Planning Supporting Caregiving into 2033
Recommendations
Theme 1 – Adapting the Definition of Caregivers to Changing Families and Communities
The recognition of informal caregivers is identified across all scenarios and by many interviewees and questionnaire respondents. By recognition, it is meant that the social status of the informal caregiving role needs to be acknowledged as a valuable contribution to society, as well as having significant economic value. Such formal recognition has the potential to increase the likelihood of persons taking on a caregiver role and safeguards against a perceived diminished social position. At present, most people are unaware of the economic and social value of informal caregiving. While information exists about the economic value of informal caregiving, this value is neither regularly monitored nor reported for public understanding. There is also no systematic method of trying to accurately capture the less tangible “social value” of informal caregiving.
Recognizing the value of informal caregiving and enhancing political and economic responsiveness to the caregiving role is viewed as vital to the well-being of the caregivers themselves, and their family and friends. One way to increase the value of caregiving is to clearly define the role of caregiver.
An important determinant of the future supply of informal caregivers is the reconstruction of legislation, rules, and eligibility criteria to an open definition of ‘informal caregiver’: one that includes non-family members and support networks, to include friends, neighbourhood and community. Two assumptions currently prevail in policy: 1) the caregiver(s) is a biological child or spouse; 2) the caregiver of preference is female. Neither of these assumptions is accurate or sufficient for caregiving policy in 2009, and will be radically outdated by 2033. The definition must be gender neutral and support both women and men in the role of caregiver. This is reinforced by a comment from one of our stakeholders who indicated that “Women are (way) ahead when providing personal care and homemaking. But we still need to look at what men are doing now, so we can focus on what they can (be encouraged to) contribute in the future. But, right now, where we start from is that men are taking their mothers shopping and shoveling snow.”
Public legislation, regulation and business policy on who is or can be a caregiver significantly determines the forms of eligible sources of informal caregiving. Public policies can expand or constrain the size of informal caregiving supply. Moving toward a definition of caregiver gives legitimacy to the role as well as a voice at the political table. It is communicated that, “We've never given the issue of informal caregiving the fundamental place in public conversations that most families feel it deserves. Not like the way there has been over child care, and early childhood development. Part of the problem has been that caregiving is seen as a family responsibility, that it's just something we do as families. I think it is a public policy issue. Providing the same opportunities to all families is a public policy issue.” It is important to recognize that two notes of caution were expressed during discussions: not to confuse the future role and functions in the community support services sector with the caring for caregiver policy development, and be aware of how much caregivers can legally do given the Regulated Health Professions Act30.
The Continuing Care Strategy “Shaping the Future of Continuing Care in Nova Scotia” is a 10-year strategy31 rolled out by the Nova Scotia government in June 2008. As part of the strategy, the Government of Nova Scotia will “acknowledge the role of individuals and families have in achieving maximum health and independence” as well as ensuring “that caregivers and health providers are well supported.” In order to support individuals and families, the Nova Scotia government recognizes that “caregivers are partners in care and clients in their own right.”
Unlike the child welfare system in Ontario, there is no systematic approach towards a proactive, early warning method of legal protection for vulnerable adults and seniors. With an increase in the number of aging parents and informal caregiving arrangements, the number of incidents of identified and unidentified abuse, neglect, and unsafe or inappropriate living conditions will grow. Jurisdictions such as Scotland have recently adopted legislation and monitoring mechanisms in recognition of existing problems and in anticipation of the future growth of such problems as the population ages32. A related approach, drawing on Scotland’s experience, could be initiated for Ontarians.
Theme 2 – Competing and Caring in Shifting Economies and Demographics
Policies and benefits which intercede and interact across the boundaries of private and public policy require a thoughtful approach towards balance, trade-offs and shared gains. Actions in one domain inevitably impact the other, often in unanticipated and unwanted ways. As part of a dialogue on Ontario’s future economic policy, there is a need to include the economic and social goal of caregiving as not simply an altruistic value, but as a vital element of a competitive workforce. In 2033, the Corporate Social Responsibility movement (CSR) and the Sustainability imperative acquired the third leg of an economic stool – “Communities that work.”
The changing nature of work, and a shifting definition of what constitutes a “competitive advantage”, needs to be reflected in Ontario businesses. Government’s role in this dialogue may be to identify the ways in which provincial businesses can leverage and build on their existing programs to incent family and caregiver-friendly behaviour. Evidence-based corporate tax credits, in recognition of internationally competitive progressive policies, may help to associate these policies with a tangible fiscal value.
Institutionalizing the value of caregiver-friendly policies may be the catalyst that is required to spark businesses’ self-directed adoption of these policies. Many stakeholders who participated in the LRSP project indicated that businesses were interested in improving their caregiver policies, but that they didn’t want to “go out on their own”. Stakeholders believed that the scenarios would be “increasingly compelling if government and business were to engage in dialogue over the fiscal incentives to enhance and promote caregiving culture.”
What remains to be addressed are the economic needs of those who might prefer to exit the labour market by choice, or because the person for whom they are caring has physical and social needs that are too intense to allow for the continued employment of the caregiver. Under these circumstances, Employment Insurance (EI) is not viewed as the appropriate social program. Further consideration should include examination of how income credits can be instituted through other programs such as providing an income allowance so that becoming a caregiver does not result in unfair economic penalty or an increased risk of poverty. Suggestions include flex hours, job sharing, working from home, where possible, and tax benefits.
“Many of the caregivers I speak with want to stay in the workforce, but the person they are caring for can't be left alone.”
The role of government, in relation to informal caregiving, was a fundamental theme, and robust across all of the scenarios. What was not apparent across the scenario themes was exactly what the role of government should or could be. The potential roles for government are diverse and, at times, even potentially in conflict: fostering an equitable and fair Ontario; building a competitive workforce and economy; supporting the evolution of recognition and social supports; and funding a modern integrated system that is flexible and responsive.
The failure to implement some public policy measures reflects a number of potential equity challenges:
a. Growing income inequality as persons suffer a financial penalty for reducing employment in order to care for a challenged child or aging parent;
b. Growing income inequality in wealth and savings as persons sacrifice future retirement income to provide informal caregiving;
c. Increased health costs due to the economic and social strains of unsupported informal caregivers; and
d. Increased number of persons living in circumstances of neglect and abandonment as families or friends chose not to assume informal caregiving responsibilities.
If there is a consensus on the role of government that is consistent across scenarios and from key informants, it is government as an enabler of choice rather than deliverer of services. The role of government is most frequently described as a facilitator of social action and adaptation, as well as having responsibility for bridging gaps, through balanced consensus-based solutions. This includes awareness and management of gaps across and within: changing family dynamics, evolving technology, shifting social connections, and the role of private industry.
The existing distribution of employee benefits, including extended health care coverage (e.g. prescriptions), is inequitable. While up to half of Ontarians do have access to such benefits, these tend to be concentrated in higher level, permanent positions.33 Conversely, those in low-end non-skilled or precarious labour markets, despite having a higher prevalence of social, health and economic need, tend to have less or no access to such marketplace-driven protections and assistance.30
The challenge is how best to create a balanced set of policy options among multiple informal caregiver stakeholders. Some options may include employer required options, social long-term care insurance, or tax-based systems of financing. While there are many choices for action, the outcome of inaction is relatively clear -- a further reduction in informal caregiver supply and an increased inequity among those who must choose between family responsibility and their other social and economic roles. Government has an active role to play in leveling the playing field and finding solutions which are balanced and mutually beneficial for both the caregiver and the provincial health care system.
At the turn of the 21st century, the federal government introduced the Compassionate Care Program under the umbrella of Employment Insurance. Most recognize and acknowledge the limitations of the current program in terms of eligibility criteria and use (e.g., the program consists of a one-time six week period), as well as lack of visibility and understanding of the program among both employees and employers.
Primarily defined as an “end-of-life” care initiative, there are major limitations on the Compassionate Care Program as a support for informal caregivers, whose role is neither predictable nor time-limited. Most view this innovative program as an early investment in creating a platform which expands eligibility and coverage to meet the demographic needs and employment challenges of an aging population.
The Compassionate Care Program is also structured to address the needs of those who ultimately wish to remain in the employment market -- a desire which will become increasingly important as the size of the labour market changes (e.g. a spike in the number of retirements). This is done through its integration within the Employment Insurance program structure, in a manner similar to maternity/paternity benefits. The same could occur for new caregiving programs and integration with existing family services.
Ensuring equity will also require consideration of the role of employers. Across Canada, there are a number of “best employer” lists which serve to both challenge other employers to strengthen their human resource policies and their workplace environments. Introducing eldercare and informal care components to the “best employer” criteria would help stimulate a private sector response to shifting the social norms and benchmarks for what constitutes a desirable employer. Best employer lists to be engaged in this option may include Maclean’s “Canada’s Top 100 Employers”; the Financial Post’s “Ten Best Companies to Work For”; the Toronto Star’s “Greater Toronto’s Top 75 Employers”; Today’s Parent’s “Canada’s Top 10 Family Friendly Employers”; and the ‘Top Employers for Canadian’s Over 50” (an appendix list to “Canada’s Top 100 Employers”). Criteria for best employer lists should include provision for informal caregiving for employees.
The importance of benefits and flexible workplace policy was identified as a robust theme in the long- range scenario planning exercise. Few participants felt that the role of businesses could be ignored, or that businesses, in turn, could ignore informal caregiving. However, there was strong recognition that carrying the economic burden of informal caregiving employees should not be left to private workplace policy. Most feel that doing so would lead to a patchwork of private sector policies which would create inequities (e.g., for those in low-paying high labour force supply positions), or uneven competitive disadvantages for employers in the marketplace.
Much of this work has focused on creating incentives for industry innovation and growth, as well as on ways to facilitate the availability of a skilled and educated labour force. However, U.S. research has indicated that the unacknowledged consequences of informal caregiving can affect competitiveness in a very different way. One recent study estimates that failure to recognize and manage the informal caregiving needs of employees can decrease productivity by approximately $17.1 billion.34 Recruitment of new employees is also increasingly viewed as a costly and avoidable expense.
Since the mid-1990s, British Telecommunications (BT) has recognized the challenge of maintaining a stable, skilled workforce, and has worked to accommodate the caregiving requirements of its employees. BT has 160,000 employees in 61 countries, of which 81% work flextime, and 18,000 are home-based workers. The net result of these policies is a 20% increase in production, and a savings of £180M per year (approximately $375 million CDN). Similarly, BT retains 99% of 1000 pregnant women a year, compared to the industry average of 60%. This represents another cost savings to BT, as they estimate minimum recruitment/induction costs to be £10,000 pounds (over $20,000 CDN) per employee.35
BT implemented a variety of flex policies (e.g., emergency leave) and eldercare benefits (e.g., access to counselors) across the company. In the words of vice president Carol Waters: “you need the policies in place first, before policy implementation becomes expensive”. In partnership with government, BT has now assumed a leadership role, and is helping to lead a change process across the business community. This includes the development of supportive legislation and policy, such as the “Employers for Carers” initiative, which was implemented in conjunction with the association Carers UK.36
BT is confident they have helped dispel the myth that addressing the needs of their informal caregiving employees is a corporate expense, and instead continues to produce hard evidence that such actions are an investment in the company’s productivity and future earnings.
One other consideration is found in Nordic studies aimed at enhancing the role of men in child-rearing. Findings point to the structural disincentives of taking advantage of existing time-off and benefit options; the decision is heavily influenced not only by economic considerations, but also ramifications for future career opportunities.37 In a reverse result, rather than dropping out of the labour market, men “drop out” of informal caregiving roles. The implication is that structural change and incentives should be gender- neutral so that men as well as women increasingly see the opportunity to be an informal caregiver as a safe career move without negative consequences.
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figure 4
Potential Employer-Sponsored Elder-Care Supports (Source: Rose, K., Work-Life Effectiveness: Bottom-Line Strategies for Today’s Workplace, WorldatWork 2006)
Aging in the Right Place was released by the Alberta government on December 15, 2008. The strategy sets out to improve health and personal care service options for seniors and persons with disabilities by enhancing supports to help them live within the community. The Continuing Care Strategy, Aging in the Right Place, was rolled out by the Minister of Health and Wellness with the support of the Minister of Seniors and Community Supports.
Through Manitoba’s Ministry of Finance, the government offers a Primary Caregiver Tax Credit. It is “an annual, refundable tax credit that can be claimed by a caregiver who is providing ongoing voluntary care to a family, friend or neighbour, verified through the Home Care program and assessed either by the regional health authority (RHA) or a Health Care Professional (e.g. Nurse, Social Worker) acceptable to the RHA. The caregiver can claim up to $1,020 per year per client for up to three clients. The application is completed once unless there is a three-year absence from caregiving.38”
The caregiver must be designated as the primary caregiver by the person receiving care. The caregiver can receive a tax credit for up to three people at any time as long as they are the designated caregiver.
The tax credit is only offered to those who are providing home care. A three-month qualifying period must be completed by each caregiver before being eligible to receive the tax credit39.
“The tax credit is intended to support caregivers who work with individuals who require more intensive forms of assistance. The intent is to help these individuals – who might otherwise have to move to a personal care home or be hospitalized – live successfully independently for as long as possible.40”
In Quebec, if a caregiver needs to obtain specialized respite services, they can claim a refundable tax credit for expenses incurred. “The maximum tax credit is $1,560 per year. The credit is equal to 30% of the total expenses you paid in the year (to a maximum of $5,200 in expenses) for specialized respite services for the care and supervision of a person.”41
Theme 3 – System Navigation and Education
System navigation is rarely used as an administrative term in either policy documents or academic research related to healthcare. Academic papers will sometimes discuss patient navigators or caregiver supports; while policy documents will often address access to information or education for caregivers.
Navigation refers to a centralized system of information to assist caregivers in navigating, discovering and learning about the options and choices for purchases, methods of monitoring quality etc.
In light of the above and for the purposes of this report, system navigation can refer to two related, but distinct activities. One implies the presence of trained personnel to ensure that caregivers have access to all available information and services. The second is directed at the creation of an information hub containing all of the necessary information about caregiver-related issues as well as available support services. The government plays a more passive role in the latter option as caregivers are responsible for accessing this database and making use of its resources.
Patient navigators have been defined as “someone who helps assist patients overcome barriers to care.”42 The creator of the patient navigator model emphasized that “Patient navigation connects individuals to real people rather than systems or buildings. Person-to-person contact is essential.”43 Voluntary organizations can frequently assume this role. There is some evidence that patient navigators and similar personnel can improve medical outcomes. However, this research is very preliminary. Australia maintains a national network of Commonwealth Respite and Carelink Centres as well as a national toll-free number to provide information and assistance for caregivers. The British NHS also has a national toll-free number for caregiver assistance.
Most jurisdictions have some type of information hub online. However, there is enormous variance in the quality and accessibility of these databases. Most government hubs in Canada are low-profile pages on ministry websites. Australia has a dedicated website for caregiver services and information. The British government has special sections for caregivers on the government services and NHS websites. The research on technological caregiver supports is limited and largely inconclusive.
Currently, Ontario’s health care system has multiple points of entry, multiple service options, some with eligibility criteria, some publicly funded, some only available through referral from a family physician. Respondents indicated that a structure needs to be in place to help caregivers navigate through Ontario’s health system, whether the person being cared for is in an institution, in the community or in the home. It is crucial that tools be put in place for people to navigate the system with the help of a ‘navigator’ or through self-navigation. Physicians and caregivers both need improved understanding about what is available and how to access these resources.
Current systems are tightly bound to existing program structures and processes, with little cross-system capacity and flexibility. They focus almost exclusively on the ‘client’ or care recipient’s needs and undervalue the informal caregiver. A forward-looking health and social system bridges program lines and the public/private divide, and creates a formal role for this function. Information programs can be used to create virtual and interactive online system navigation putting the caregiver in control of the navigation process on a 24/7 basis. This 24 hour accessibility is important given caregivers’ time constraints, and difficulty fitting into the ‘9-5’ working hours of human services.
Stakeholders indicated that “The way the current system is constructed caregivers have to do this incredible dance to access services. It’s an incredible burden on them. When are we going to do something about streamlining access to information and services? This is a huge stress on these families. From my 35 years of experience at all levels, I can tell you: it's just nuts.”
Respondents described the Alzheimer Movement that includes supports for caregivers, as one that has been crucial to the beneficiaries of the Alzheimer Society Chapters since inception in the 1970’s and 1980’s. In assessing caregiver needs, chapter support staff work with caregivers to identify support networks and encourage links with identified individuals to help with the caregiving roles. As well, consideration ought to be given to founding Family Resource Centres that are staffed by volunteers who are family members and who have lived experience that guides them in their assistance with other family members. They could help by providing information, helpful tips about how to navigate through the system and provide support for other family members so that their caring role continues.
Respondents also noted current structures that may prove useful in developing a system such as Service Ontario, E-Health, and the Chronic Disease Management Initiative. It is recommended that consideration be given to leveraging current funded programs and services rather than creating a new layer in the system.
Education is a powerful policy lever with the capacity to inform, engage and shift public attitudes. The Canadian Caregiver Coalition describes “Enabling access to user friendly information and education” as one of the essential elements of a Canadian Caregiver Strategy44. The Special Senate Committee Report on Aging45 agreed and identified access to information and education as significant components of a national caregiver strategy. It also identified two existing programs as potential models for patient navigation. The East Kootenay senior caregiver network supplies information and support to caregivers in a large, mostly rural, area of British Columbia through regular group meetings, a buddy system, a newsletter and a toll-free telephone line. The First Link program here in Ontario was also cited. First Link coordinators are assigned to identify people within their region who suffer from impairment and inquire if they require any assistance or support.
A system of education for informal caregivers is lacking. Creating a system for both virtual and person- to-person education would add value to the informal caregiving initiative and supports available for the caregiver role. These supports may include setting up caregiving resources and how to find assistance; how to access and monitor the quality of support; and more complex and sophisticated learning on medical issues etc.
Respondents indicated that caregivers face an information deficit in that they do not receive timely, accurate information about where to go for services or support. Improving the quality of information available and making caregivers aware of how to access a full range of resources in the community is key to improving the lives of caregivers. However, respondents also cautioned that consideration must be given to recognizing that not all caregivers have access to a computer. Thus, information for caregiving and caregivers must be available in print form as well.
Respondents indicated that a caregiver’s educational needs can be identified through an assessment. For example, we need to ask: ‘Can you do this work and perform the care required with intravenous therapy, oxygen delivery systems and catheters in the home if you haven’t experienced them before?’ Once the caregiver’s education needs are identified, s/he can be directed to the relevant education tools or information.
A lack of information is often cited by informal caregivers as a major system deficit in Ontario. Closing the information deficit is viewed as a critical step in enhancing the capacity of informal caregivers to effectively deal with future challenges. Ironically, the information deficit is sometimes a consequence of an information surplus. This discrepancy between quantity and accessibility can be the result of fragmentation, contradictory content, and sheer overload. At other times, the deficit is caused by the absence of an informal caregiver lens applied to the available material.
Today’s technology, using virtual approaches and telephone services, is able to support an information and support network built around a provincial portal or virtual hub that can then be integrated and linked to localized supports. The private sector offers many successful models of a centralized point of access to localized services (e.g. hotel and restaurant reservations; customer support lines).
As part of Alberta’s Aging in the Right Place strategy46, the “Caregiver support and enhanced respite” initiative focuses on caregiver support and enhanced respite for caregivers. In some cases, informal caregivers in Alberta provide around 80% of the required care. A provincial caregiver education, skills training and counseling program will be in place. In addition, a mechanism to pay caregivers for out-of- pocket expenses and respite care will be implemented. This initiative is targeted to be completed in 2009.
Additionally, the second initiative of the Aging in the Right Place strategy calls for a health system navigation system to support seniors, persons with disabilities and their families with making appropriate, informed care arrangements – knowing their limitations and choices. From 2009 to 2012, a health system patient navigation system will be implemented with a province-wide navigation system in place by 2012. In 2012, an evaluation and continuous improvement system will be in place to support navigation47.
The Nova Scotia strategy48 also outlines improving how individuals and their families can access and move through the continuing care system so that the right care is received at the right time (e.g. a directory of services in multiple languages).
Theme 4 – Building on Social Networks
With the shrinking size of the average Ontario family,49 and its implications for how informal support is organized and supported, a common theme is how to encompass the role of friends, neighbours and the community, and how to support the sustainability of these roles. There are few places where an informal caregiver can find assistance with the strains and challenges of their role.
Most existing social policy is linked to the concept of neighbourhood as the basis for service delivery and social connection. One of the prevailing policy concepts related to this is the ‘hub’, a centralized location with a wide mix of integrated services. The ‘hub’ compliments the neighbourhood approach and lays the groundwork for future needs when exclusively neighbourhood-centric approaches will no longer meet a community’s needs.
Investment in this area should include a framework focused on strategic coordination, advice and outreach. With harmonious implementation, ‘hubs’ that build on existing platforms will provide alternative supports at the community level. These geographically based ‘hubs’ should be attached to known locations in the community such as schools, community centres, Legions or Community Health Centres.
Included in the infrastructure are co-operative living and ways to integrate community members and the service system. Two ideas suggested throughout the LRSP process were: enabling peer support for caregivers in the form of “Family Resource Centre” and neighbourhood networks of caregiving based on models like “Share the Care”50 and intergenerational care programs (which would recruit and educate young people as caregivers to the older generation and vice versa). The “Share the Care” model in particular is a proven method of engaging and creating networks to help distribute the burden of care for someone who requires support over a medium to long period of time.
In a Canadian context, social cooperatives can evolve from existing models of social connection. Unions, professional groups (e.g. teachers and civil servants), and demographic communities could facilitate opportunities for shared informal caregiving and volunteerism -- building on groups that are already closely aligned in background, experience and preferences.
In Japan, a nation at the forefront of the elder explosion and a dramatic undersupply of family informal caregivers, “Senior Co-operatives”, by and for seniors, have grown to more than 100,000 members over the past decade.51 In the Koreikyo model, the active elderly (roughly 55 to 75 years old) provide care for the frail elderly (generally 75 and older) in the care receiver's own home, through the co-operative's home-helper dispatch centers.
Social connection amongst caregivers can also be mirrored with the development of technological connection. Contrary to the prevailing perception of older adults and technology use, there is online activity in this demographic cohort.52 Rather than Facebook and MySpace, older adults engage with online social network services such as Rezoom, Multiply, and Boomertown.53
The current dominant ideal of social connection is based on a strong sense of geographical-based neighbourhood community. The neighbourhood approach reflects a time in which people were geographically, socially and economically located for life in a single geographic area of close proximity. However, considering the forces of the modern economy, globalization and technology, The neighbourhood community as policy platform needs to evolve to capture the dynamic forms of social connection, now and in the future.
Despite best efforts, many people will remain vulnerable to a future in which their limited social network does not translate into a robust caregiving network. This risk is particularly prevalent among those who are already economically and/or socially marginalized due to extreme poverty, homelessness, serious mental illness, substance abuse or similar challenges. Research tells us that often among these individuals, social networks are non-existent, small or dysfunctional.54
There are demographic cohorts in Ontario who have also, broadly speaking, not been reached by a generic service structure, which lacks the capacity for outreach and/or specialization. In the case of northern, and northern Aboriginal communities, accessibility is a constant issue.55 Services which have the flexibility to be culturally relevant and responsive were also highlighted by respondents as a critical step in building an inclusive system.
Ensuring equitable support among vulnerable populations will continue to require the services and attention of professional and community agencies. At the same time, a philosophy of enabling and strengthening existing and building new forms of social support should guide the formal service models. Current service models tend towards being professionally intensive, at the same time as being fragmented and disconnected. New forms of “wraparound” care -- social networking and integrated services -- need to become the dominant mode for modern caregiving support models.
“My grandmother mostly spoke Ojibwa. She was placed in a room with an Italian woman who didn't speak much English. This was upsetting to her. All she did was cry, she didn't want to be there. Her home community was tough, she had plumbing but no water. But when her ties to community and culture were broken, her spirit was taken away. It's more than just where we live, it's our culture. If there had been a resource or opportunity for her to be with other First Nations people, it might not have been so bad for her."
Consideration should be given to finding an Office that relates well with the Seniors’ Secretariat and other relevant bodies that would include the broader populations of children and adults so that concerns, studies, policies may be discussed, and dialogue, coordination and best practices continued and strengthened. It is necessary to begin to build a network of expertise across Canada. As well, the idea of organizing cooperative living complexes is a variation of social supportive housing which is an option for LHINs to develop under the “Aging at Home Strategy”. Patient Centred Medical Home is a complementary approach that has been utilized effectively in a number of jurisdictions to maintain people in the community, as they prefer, rather than going into residential care56. Establishing an “Office for Caregivers” is an option for coordinating the support system for caregivers. This would offer more flexibility to work across multiple population groups (and not just seniors) and look beyond the health system for a broader strategy.
Noteworthy is ‘Caregivers Nova Scotia,’ an association dedicated to providing recognition and practical supports for family and friends giving care. It is a not-for-profit association with a volunteer board of directors and a staff of three. Their vision is “Caregivers are supported as essential partners in care.” They receive financial support yearly from the Nova Scotia Department of Health - Continuing Care Services. They provide education to caregivers (workshops newsletters, book and lending library), telephone caregiver assistance and community-based peer support groups. In addition, the Association helps influence public policy for caregivers by working on Task Forces and Working Groups57.
Social connection over the next thirty years will most likely progress in many ways, perhaps even less shaped by the restrictions of geography and proximity. While discarding and neglecting the local community model is neither desirable nor logical, it is necessary to explore structures and processes of cooperation that support the social connections of a mobile society.
Conclusion
Ontarians “value many aspects of health care. It can contribute to good health and a good quality of life. We value the system’s role in comforting and caring for people when they are in poor health. We value a system built on principles of fairness, equity and universality. Beyond those basic values, tougher questions emerge”
(Health Council of Canada. Value for Money - Making Canadian Healthcare Stronger. Health Council of Canada, Feb 2009 p4.).
Caregivers are critical partners in the health system. Recognizing the value and contribution of caregivers, as well as their emerging challenges, Ontario initiated the Caring-About-Caregivers project.
A new perspective on informal caregiving is needed – one that would describe the interconnected opportunities that would sustain informal caregivers, and, by extension, improve the quality of care. Government, experts, patient advocates, service providers, caregivers, neighbours, business and the community, with all the bridging social networks, should all have a stake in sustaining informal caregivers and caregiving.
This project identified five positive and plausible principles that framed the informal caregiver initiative. First, minimizing the social, economic and health costs of informal caregiving increases the likelihood that families will willingly assume the responsibility of caring for challenged and dependent children or aging parents, as most do now. Second, fostering balanced capacities and responsibilities between men and women will stimulate a larger supply of persons to care for children and aging parents. Third, with respect to caregiving provisions and policies, the productive capacity and economic prosperity of Ontario is dependent on creating a reciprocal and flexible partnership between labour force participants and business – a caring Ontario is a competitive Ontario. Fourth, creating choice empowers informal caregivers and the care recipient, thus establishing a system that is more effective and efficient. Fifth, changes in social connections do not represent a breakdown in caring and caregiving but a different form of how these occur.
Through the LRSP planning process, stakeholders, who were actively engaged in consultations, strategic discussions and interviews, surveys and collaborative sessions, described a new vision for the future of informal caregiving that can inform future policy direction. The 8 themes and 23 options were deemed essential key components for providing appropriate and sustainable support for informal caregivers and, as such, should all be considered. Based on further consultations with partners, this report is recommending development begin first on options in the following 4 themes:
- Adapting the Definition of Caregivers to Changing Families and Communities
- Competing and Caring in Shifting Economies and Demographics
- System Navigation and Education o
- Building on Social Networks
This will help lay the foundations for the subsequent 4 themes.
Continuing support from the government, employers and community is needed to develop and sustain informal caregivers in the future. Caregiving as a social responsibility needs to be valued across society. Social networking, a strength yet to be ‘tapped’ to its full potential, is a source that can positively impact informal caregiving within the economic reality of Ontario’s health care system. “The challenge for policy makers is to determine how best to meet the range of needs, insure that families are not overburdened and, at the same time, control publicly funded costs”58.
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