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ARCHIVED - Home Care in Canada 1999: An Overview

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Table of Contents

1.0 Introduction

Nearly all Canadians and their families will sooner or later be confronted with home and community care issues. Canadians who need home and community care view this sector of services as extremely important, but frequently find it underdeveloped and seriously lacking in significant ways. For others, who have not yet experienced the need for it, home care remains largely invisible.

The pressure to expand and modify home and community care can be expected to grow in the foreseeable future as a result of the shift of care away from institutions toward home and community-based settings; demographic changes in the population; changing public expectations; and advancements in medical and information technology.

The experience of many people who have used home and community care services reinforces the common belief of Canadians that people who need care and are able to receive it in their own homes and communities are happier, enjoy a better quality of life and benefit from improved health outcomes.

It is hoped that this overview paper will provide a foundation upon which to base the dialogue and action necessary for home and community care to further evolve as a well-designed component of a fully integrated, responsive and quality health care system.

2.0 The Development of Home Care in Canada

2.1 Early Developments

Public home care programs have come into being in Canada over the last quarter century as a result of both federal and provincial initiatives.

Prior to 1970, home care programs tended to focus primarily on professional services and the acute care needs of patients in the home. These programs were primarily local, community programs, often hospital-based or organized through agencies such as the Victorian Order of Nurses, and the Red Cross.

In the 1970s, some provinces began to formulate a wider vision for home care - one that included both acute care and supportive services for the frail elderly and Canadians with disabilities - and initiated either pilot programs or phased-in implementation plans for a broader range of services.

The overall direction and rate of change in the delivery of home and community care services has varied across the country. Joint federal, provincial, territorial (FPT) work on home care began in 1974, with the establishment of a working group on home care, which was subsequently expanded to address continuing care. Given the diversity of home care programs across jurisdictions, FPT work has, in the past twenty years, identified: the need for comparability of definitions and data; the need for sharing information on outcomes and best practice models; and the need to address home care within the broader continuum of care. An important focus of much of the FPT work related to home care has been the need to develop the continuing care sector and to better integrate institutional and community-based services into a smooth continuum.

The federal funding structure -- through which the federal government makes contributions to the provinces and territories to support health and social programs -- has also influenced the speed and direction of the development of provincial and territorial home care programs. From the beginning of Medicare until 1977, federal health funding was tied to a federal-provincial cost-sharing formula for hospital and medical services. The Canada Assistance Plan (1966), which provided a complement to the formal funding of hospital and medical services, became an important milestone in the development of home care, in that it provided federal funds on a 50-50 cost-shared basis to the provinces for the provision of social services to those in need. This funding encouraged the development of the important social support element of home care (e.g., homemaking and respite care).

From 1977 to 1996, the Established Programs Financing Act provided federal transfers to the provinces and territories for extended health care services. For the first time, federal health funds were provided on a population-based formula rather than cost-sharing of specific, defined services. This allowed the provinces and territories the flexibility to develop extended health care services, including ambulatory care and home care, as well as other extended health care services such as long-term institutional care.

By the late 1980's, home care programs had been established in all provinces and territories. Supportive services were provided only to certain populations, such as the frail elderly or long-term disabled. In most jurisdictions, supportive services were eventually extended to individuals in the broader population with assessed need.

The creation of the Canada Health and Social Transfer in 1996 consolidated federal transfers to the provinces and territories for health and social programs.

2.2 Recent developments

The National Forum on Health was launched in 1994 to involve and inform Canadians and to advise the federal government on innovative ways to improve the health and the health care of Canadians. In 1997, the National Forum released its report, calling for increased integration of home care within the publicly funded health care system and recommending the creation of a fund to support pilot studies and evaluations.

In the 1997 Speech from the Throne, the federal government reiterated its commitment to a publicly administered, comprehensive health care system that provides universal access to high quality care for Canadians anywhere in the country. The Speech from the Throne also outlined the intention of the federal government to work with provinces and territories to take measures to support Canadians in addressing the expanding need for home and community care services.

In addition, the Speech from the Throne responded to the National Forum recommendation for a research and development fund by announcing the establishment of the Health Transition Fund (HTF). With the agreement of the provinces and territories, the multi-year HTF has four priority areas for further research and development: home care, pharmacare, primary care reform, and integrated service delivery. The Health Transition Fund also provided funding for the National Conference on Home Care, which was co-hosted by the federal government and the government of Nova Scotia in March 1998

In early 1998, continuing care/home care was identified as a priority area for federal/provincial/territorial action by the Deputy Ministers of Health and approved by the Ministers of Health in September 1998.

Ministers agreed again in September 1999 to continue to work collaboratively on the important issues of integration of services including home and continuing care. The 1999 Federal Budget provided provinces and territories with substantial new funding - $11.5 billion over five years-through the Canada Health and Social Transfer (CHST) to enable provinces and territories to increase spending in areas they view as priorities, which in some cases may be the home and community care sector.

In addition, the Budget injected a total of $1.4 billion over three years into a number of key health initiatives, all of which have relevance for the development of the home and community care sector. These include :

  • $50 million over three years to develop innovative approaches to home and community care and access to quality health services, particularly in rural communities;
  • an enhanced First Nations and Inuit home care and community care program and a First Nations health information system;
  • increased funding for health research;
  • harnessing information technology to improve the delivery of health care, the accountability of the system and improved access by Canadians to health information.

The October 1999 federal Speech From the Throne stated: "With its partners, the Government will support the testing of innovations in integrated service delivery in areas such as home care and pharmacare, working toward a health system in which all parts operate seamlessly."

Over the past few years, key stakeholders at conferences, roundtables and experts' meetings and a range of written submissions have echoed and reinforced the following themes, including the need:

  • for collaboration among federal, provincial and territorial governments to design an integrated home care system that is flexible and focussed on client need;
  • for ongoing federal commitment and funding to support a publicly funded home care system that is delivered fairly and appropriately to Canadians on the basis of assessed needs;
  • to determine the definition and scope of a home care system and to define common principles and standards upon which to base a national approach to home care;
  • for further research related to home care, particularly in such areas as the benefits, cost and outcomes of home care, identification of best practices, and quality of life issues;
  • to develop an integrated human resources plan for regulated and unregulated home care workers that examines such issues as employment standards, working conditions, remuneration practices, training and appropriate support mechanisms;
  • to support the development of First Nations' home care programs that are designed, administered and staffed by First Nations whenever possible;
  • for continued investment in information management and technology.

The Report on the National Roundtable on Home and Community Care provides an overview of the Roundtable hosted by Home Care Development, Health Canada in February 1999 to: provide a forum for information exchange; identify priorities for action; discuss possible values and building blocks for home care; and obtain input on the desired role of the federal government in helping to advance the home care sector in Canada. The report is available on the Health Canada website at www.hc-sc.gc.ca.

3.0 Home Care in Canada: Where Are We Now?

3.1 What does "home care" refer to?

Everyone "knows" what home and community care is, yet there is no single, universal agreement of what services should be included in the definition.

The 1990 Health Canada Report on Home Care prepared by the Federal/Provincial/Territorial Working Group on Home Care (a Working Group of the FPT Subcommittee on Long Term Care) defined home care as:

" An array of services which enables clients, incapacitated in whole or part, to live at home, often with the effect of preventing, delaying or substituting for long-term or acute care alternatives."

"Home care may be delivered under numerous organizational structures, and similarly numerous funding and client payment mechanisms. It may address needs specifically associated with a medical diagnosis (e.g. diabetes therapy), and/or may compensate for functional deficits in the activities of daily living (e.g. bathing, house cleaning, food preparation).

Home care is a health program, with health care broadly defined; to be effective, it may have to provide services, which in other contexts might be defined as social or educational services (e.g. home maintenance, volunteer visits)."

"Home care may be appropriate for people with minor health problems and disabilities, and for those who are acutely ill requiring intensive and sophisticated services and equipment. There are no upper or lower limits in the age at which home care may be required, although as in other segments of the health system, utilization tends to increase with age."

In this paper, recipients of home and community care include individuals who need care due to frailty, disability or a medical condition (acute or chronic), as well as family members who need support in care giving activities. Home and community care refers to an array of services provided in the home or other closely related settings (such as, adult day centres, schools, workplaces) that enable individuals to live in their home environment and to function at their optimal level.

Depending on individual needs, home and community care services may be curative, rehabilitative, preventive, palliative or supportive in nature. A wide range of therapy, medical and nursing services may be delivered in the home, often accompanied by the need for drugs, equipment and other medical supplies to be available in the home. Supportive care may include not only assistance with activities such as personal care, meal preparation and homemaking tasks, but also counselling and spiritual care. Home and community care may be delivered by a combination of regulated professionals, non-regulated home care workers and informal caregivers. The goals of home care can vary, but may include:

  • assisting individuals to maintain or improve their health status and quality of life;
  • enhancing the individual's capacity for autonomy;
  • enabling individuals to either remain at or return to home and receive needed treatment, rehabilitation or palliative care;
  • supporting the family to cope with an individual's need for care;
  • providing informal caregivers with the support to provide quality care and support for their own associated needs.

Home and community care takes place in the community and involves both the health and social systems. Other community services which supplement home care include:

  • volunteers providing shopping assistance to the frail elderly, so that they can continue to live at home;
  • meals-on-wheels programs to augment the nutritional intake of seniors and other home care recipients;
  • special transportation services that make it possible for a disabled person to have access to physician or therapist care in an office or clinic; and
  • adult day centre programs, sometimes called "day away programs," that provide social interaction for care recipients and needed respite for families.

Case management, including assessment and coordination services, are also key to the provision of home care. As well, the links between home care providers and primary care physicians are particularly important to successful long-term management of care in the home.

3.2 Who funds home care?

In Canada, most home and community care services are funded by provincial, territorial and some municipal governments, with funding support from the federal government through general transfer payments for health and social services.

The federal government also funds some home care services directly. For example, through Veterans Affairs Canada, the federal government funds home care services for Canadians who served in wartime or on special duty, as a supplement to provincial or territorial home care programs. Through the Building Healthy Communities program, Health Canada provides limited funding for home nursing services provided on-reserve and in Inuit communities. The Department of Indian Affairs and Northern Development provides funding for Adult Care Homemaking Services available on reserve only to those over 18 years of age.

Some individuals (or their families) pay directly for private home and community care services, either because they are not eligible for publicly funded services, or because they require additional services that are not covered by the public home care system, or because they do not wish to submit to "official" home care assessments. Some home care expenses are also covered by private health insurance plans such as those provided by employers. Tax relief through the income tax system offsets a portion of some of the private expenditures on home care and respite care in certain circumstances.

In a number of jurisdictions, "self-managed" home and community care is available to individuals who meet certain criteria and who prefer to manage their own home care rather than have services delivered through the provincial or local home care program. For individuals who are managing their own care, the provincial program or health region provides funds based on assessed need, and the individual uses these funds to arrange for services that may be delivered by a care provider of his or her choice. Self-management programs vary in the kind of training, information and supports that are offered to those who are self-managing care. Most self-management programs allow for the provision of such supportive services as attendant care or homemaking, with arrangement for any necessary professional services (e.g. nursing or physiotherapy) typically remaining within the regular home care program.

In recent years, private-sector health expenditures in general have risen as a percentage of total health expenditures, increasing from 25.4% in 1991 to 30.1% in 1996.(1)

However, there is a perception that the private-sector component of home care is also growing as a result of the combination of the shift of care into the home and community, and the recent emphasis within the health sector on cost containment in publicly funded care.

Formal home care services are provided by public servants, publicly contracted professionals, non-profit and private-sector agency employees, contracted workers, and volunteers. The home care labour force includes regulated professionals, such as nurses, physiotherapists and occupational therapists. It also includes unregulated workers such as health care aides, home support workers, personal care workers, and attendants.

Volunteers also provide support to many programs or services. They provide, among other things, friendly visiting, telephone reassurance and monitoring, errand running, shopping, meal preparation and delivery, and the organization of leisure activities.

3.3 Who provides home care?

3.7 million Canadians (17% of the population aged 15 or over) provided one or more hours of care to seniors in the week prior to the 1996 Census.(Statistics Canada Census, 1996)

In 1996, 2.8 million Canadians 12% of the population aged 15 or over) provided informal, unpaid assistance to someone with long term health problems.
Statistics Canada, General Social Survey, 1996.

3.4 The contribution of informal caregivers

Family members and friends, sometimes called "informal caregivers", are often key to the provision of care in the home.

Although precise data are not available, it is thought that informal caregivers provide the majority of care given in the home. Care may include a variety of tasks, such as personal care, meal preparation, household support, assistance with shopping and transportation, care management, emotional support, or financial management. Informal caregivers are estimated to provide as much as 75% to 85% of this kind of care to individuals who have long-term health problems or disabilities.(3)

According to the Statistics Canada General Social Survey, in 1996, there were 2.8 million Canadians who provided informal care in the home to someone with a long-term health problem or disability. Most informal caregivers are between the ages of 25 and 64, with the largest group comprised of women aged 45 to 64. However, seniors aged 65 or older also provide significant amounts of care. In 1991, 36% of all informal caregivers were employed. Among those employed outside of the home, 33% reported disturbances to their work due to care giving responsibilities.(4)

The contributions made by informal caregivers are extremely important. Care provided by a family member or friend can have a value related to the quality of life of the care recipient that cannot be replaced by any amount of formal services. At the same time, the contributions of family members also reduce or eliminate the need for some formal services. For example, many individuals do not require intensive personal services, but do need someone to watch over them on a regular basis. While this may not always be a difficult burden for caregivers, it could be a tremendous cost for the system if the caregivers were no longer available. One study found that, on average, family members caring for the elderly

contribute unpaid services that would have cost between $30 and $60 a day to replace with formal services.(5)

Family members who are providing care may need support in the caring role, both to help them meet the needs of the person requiring care, and to help them meet their personal or family needs during the time they are caregivers.

Some home care programs provide supports for family caregivers which may include information, advice, training, service co-ordination, and respite care.

3.5 How do publicly funded home care programs work?

Home care is not subject to the five principles of the Canada Health Act. Nevertheless, each province and territory has established its own publicly funded home care program, and some provinces cover some home care services as part of their provincial health insurance plans. Specific features of provincial/territorial home care programs-- including program policies, services, and delivery mechanisms -- differ from jurisdiction to jurisdiction.

Depending on the province or territory, public home care programs are administered by either:

  • provincial or territorial health departments, or social service departments (where these are distinct from health departments), or
  • local community or regional health boards.

Publicly funded home care services are delivered through a variety of different arrangements. In some provinces, all home care workers are hired directly by publicly funded organizations, such as district health boards. In other provinces, governments fund agencies (either for-profit or non-profit) to deliver home care services on their behalf. In some cases, provinces use a mix of both arrangements.

Public home care programs are available on the basis of eligibility criteria, which also vary from jurisdiction to jurisdiction. Generally speaking, Canadians who meet the eligibility criteria receive professional services at no charge, although there may be some global resource limits that restrict them from receiving the level of service they have been assessed to need. In many cases, those who need support services, medical supplies, treatment equipment, or medications are required to pay user fees, based on an assessment of income.

3.6 Who receives home care?

Appropriate and timely home and community care support can be liberating for individuals with long-term care needs due to disability or frailty, allowing them to live independently. Individuals with illnesses that can be treated at home are reassured by the ability to access home care which has meant being surrounded, and supported by family and friends. Home and community care has also provided comfort and support for family members caring for others - perhaps raising a child with disabilities, caring for a frail, elderly parent, or coping with a dying family member.

A growing number of people in Canada are receiving public home care services. The 1994/95 Statistics Canada, National Population Health Survey (NPHS) estimated that 522, 900 Canadians, aged 18 years or older received formal home care.

In 1996/97, the NPHS estimated that close to 545,000 people, aged 18 years and older (2.5% of the population) received some type of government supported home care in the past year.

According to the NPHS, the majority of people receiving home care are elderly and chronically ill. But many others -- from new mothers and their babies, to people of all ages living with disabilities, to people dying from cancer, AIDS and other illnesses -- also receive care in the home. The probability of receiving formal home care is also higher for individuals with lower family incomes and for individuals who live alone.

However, only a fraction of the home care provided to people can be reflected by statistics on formalized home care. Recent data from the 1997 Statistics Canada, General Social Survey show that most care in the home is given informally, very often by female family members.

4.0 The Drivers of Change in Home Care

Home care is a small but rapidly growing part of the health care system. The broader health system is undergoing significant change as well, and the ways that home care and other health sectors interact are affected. The home care sector is having to adapt to a broad range of changes:

  • the availability and organization of hospital and institutional services;
  • labour markets and the supply of home care workers;
  • the demographic and social environment in which care takes place;

4.1 Changes to the health care delivery system

Early Developments

In Canada's health care delivery system, an increasing number of individuals are being treated in community settings, while a smaller number of people needing medical care are being admitted to hospital. In part, advances in treatment, technology and drug therapies have made it both more technically feasible and more cost effective to diagnose and treat a number of conditions entirely outside of hospital. There is an increasing use of day surgery and inpatient surgery techniques with shortened post-operative recovery times. Those who are actually being admitted to hospital are staying for shorter periods of time than would have been the case just a few years ago. However some still require care when they are sent home.

Recent research has shown that many patients who have recuperated in hospital in the past could just as effectively have recuperated in a setting with a less intense level of care, for instance in the home, if home care were available/ provided.6

Alternatives to Acute CareWinnipeg, University of Manitoba, Manitoba Centre for Health Policy and Evaluation. 1996

There has also been a shift in the way that long-term care is provided to those who are disabled, chronically ill or frail. Goals in long-term care include maximizing quality of life and keeping the health and level of functioning of the care recipient at as a high a level as possible for as long as possible. These goals are usually most feasible to attain when care is provided in the home or as close to the home as possible, for as long as possible.

4.2 The role of new technologies

New medical and information technologies are redefining home care. In the past, it was often necessary for patients to stay in hospital until they were fully recovered. Sophisticated care that was previously delivered in hospitals can now be delivered at home. Advances in medical technology are allowing for complex therapy/treatment services -- such as chemotherapy, dialysis, pain management, and intravenous therapy -- to be delivered in the home. At the same time, information technology is creating new possibilities for services to be integrated across settings -- from hospitals to community clinics to individual homes -- with clinical and administrative information shared across health care sectors.

4.3 Social and economic pressures on informal care

Family members have traditionally played a unique role in home care. They are a critically important part of the care recipient's natural environment and thus a provision to be drawn on in the provision of care. At the same time, health system restructuring in recent years has introduced rapid changes to the way health care is delivered in Canada, resulting in an increased need for home and community-based alternatives to institutional care, including hospital care. This has often resulted in an increased pressure on families to provide even greater levels of assistance to family members who require home care . While the majority of Canadians who provide care to family members feel very positive about their contribution, they often have needs that arise directly from their work. Their own health and economic well-being may suffer as a consequence of the kind and amount of care they provide.

This increased pressure also comes at a time when the availability of informal caregivers is decreasing as a result of an increased geographic mobility of families and changing demographics, including the increased participation of women (traditionally the primary caregivers), in the labour force. The stresses of combining long-term care giving and full-time work can have negative consequences for caregivers, care recipients, and other family members.

These social and economic pressures can affect the availability of informal care, the nature of the care that is available, and the nature of the needs of informal caregivers for support from the home care system.

4.4 Recognition of the rights of individuals to choice and autonomy

Recent decades have seen growing recognition of the rights of disabled, frail or ill individuals to have choice in care and to live as independently as possible. In general, Canadians have

increasingly high expectations regarding the quality of services they will receive and the extent to which they will be able to exercise choice in what services they will use, when they will use these services, and in what setting.

Future generations of seniors -- the group that comprises the largest category of people who use continuing care services -- will be unlikely to accept a situation in which the care system dictates to them where they will live if they need care.

Those who need care or support to live outside of institutions have advocated for increased flexibility in the provision of home care, and for strengthening the sector's linkages to other sources of support, such as social support services and special housing. They have also advocated for increased management of home care resources by individual care recipients themselves, who would then have maximum flexibility in arranging their own home care services.

4.5 Canada's aging population

Canadians Caring for each other

3.7 million Canadians (17% of the population aged 15 or over) provided one or more hours of care to seniors in the week prior to the 1996 Census.
(Statistics Canada Census, 1996)In 1996, 2.8 million Canadians (12% of the population aged 15 or over) provided informal, unpaid assistance to someone with long-term health problems.
Statistics Canada, General Social Survey, 1996.)

The proportion of older adults in the population is growing.(7)

The group that is growing most quickly, in absolute and relative terms, comprises those age 75 and older. Both the aging of the post-war "baby boomers" and increasing longevity are contributing to the aging of Canada's population.

As the population ages, the number of frail elderly requiring high levels of health care and social services is expected to grow significantly. According to the Statistics Canada, Health Reports, Summer 1998, considerably more seniors received home care than resided in long-term care facilities, and the availability of home care is no doubt an important factor in an individuals's ability to remain in the community. In many cases, care in the home substitutes for, or delays the need for, more intensive, and therefore more costly, long-term institutionalization.

5.0 Challenges in an Evolving Sector

In recent years, the home care sector has shifted from an emphasis on long-term and preventive care to a stronger emphasis on acute care needs and building integrated systems. This has created transitional issues for labour and organizational relationships among the home care, primary care and institutional sectors. Although additional resources have been

put into home and community services in response to health system restructuring, home care resources are still inadequate in many regions to meet the additional demands resulting from that restructuring. Yet the major demographic, social and technological trends indicate that the demand for home care will continue to increase in the coming decades.

Across the country, governments and service providers are taking steps to identify and deal with these challenges. Some of the key issues for the future for home care are described below.

5.1 Spanning the range of care in a unique environment.

Home care is not merely a substitute for institutional care. The home as an environment for providing care potentially offers both a greater degree of independence and control to care providers and to individuals who need care. Care in the home more naturally reflects individual differences, and can be tailored to individual need. Giving care in the home demands a greater degree of adaptability on the part of workers who, for example, may not have access to the kinds of specialized or standardized equipment available in an institution (e.g., for bathing a person with mobility impairments). Supervision and team working relationships in home care differ substantially from those in an institution. Home care relies on resources present in the home and the surrounding community, but some homes and communities are better able than others to provide this support.

As already noted, home care spans a wide range of types of care, from the most technology-intensive care to the simplest and equally important supportive care. The range of clients or patients in home care is as broad as the population, and similarly their needs vary widely.

These unique aspects of home care have implications for the development of the home care sector. In areas such as: the development of standards for home care and measures of quality of care; training and human resource management in the sector; and the need for and development of data and information systems for home care.

5.2 The provision of quality services:

Quality in the health care system is a complex and multidimensional concept that includes the ideas of accessibility of care, appropriateness and effectiveness of care. This is true for institutional care and no less true with respect to the home care sector. Participants in the 1998 National Conference on Home Care identified a need for national standards, as well as indicators of quality and desirable outcomes. Definitions and strategies related to quality in home care will be important to the safety and well-being of home care clients and the future strength of a growing home care sector.

There are three approaches to measuring quality in the health care sector:

  • quality management within the care delivery organization, applying principles of continuous quality improvement
  • service accreditation programs in which standards are set, reviews conducted and reports prepared by external accrediting bodies
  • third-party certification of quality management systems.

Each of these three approaches is currently being applied in parts of the home care sector in Canada. Because home care has developed more recently, accreditation systems and outcome measures are only beginning to be used. Ideally, all programs and agencies delivering home care should have in place a quality improvement process.

While the assessment of outcomes is the most important measure of quality, the actual development of outcome indicators for home and community care organizations, agencies and programs is still in its infancy.

The challenges to indicator development include:

lack of consensus in Canada on what the outcome measures for home and community care should be

lack of standardized data collection processes and systems

cost of implementing electronic documentation and data systems

resistance of home care delivery agencies to sharing information, due to the competitive market for home care in some provinces

lack of consensus among governments in Canada with respect to the need for national standardization in home care.

The measurement of outcomes is a resource-consuming activity that requires a supportive environment, takes time and must have dedicated resources. A lack of resources has been one impediment to the measurement of outcomes in many organizations that deliver home care services.

5.3 Human resource challenges

The capacity of the home care industry to attract and retain an adequate supply of appropriately trained home care workers is critical to meeting the needs of both chronically disabled and short-term, post-acute home care clients. Unlike other areas of the health sector, home care employment issues are characterized by such features as a large unregulated workforce, isolated work settings, and shared responsibilities for care with family members. As a result, it is a difficult task to classify various jobs, track labour force trends, and prepare for future human resource challenges.

A 1995 study conducted by the Canadian Association for Community Care concluded that there is little information to guide the development of the home care labour force.

Participants in the 1998 National Conference on Home Care echoed this concern. They also noted ongoing disparities in home care, such as:

  • employment standards
  • wages and benefits
  • working conditions
  • training opportunities, and
  • supervision within the formal care sector.

All of these issues are pressing, given that the realities of the home care sector include:

  • an increasing reliance on home care as a substitute for institutional care (especially for acute care)
  • a growing demand for services and a decreasing supply of family caregivers
  • a stronger emphasis on consumer-directed care and on self-managed programs
  • a movement toward unionization of home care workers
  • a mix of private and public and regulated and unregulated workers in the sector, and
  • a perception of home care as marginally important in the health delivery system.

Alongside formal and informal caregivers, volunteers also play a valuable role in many areas of health care, including providing services such as "meal s-on-wheels" and transportation services, among others. Despite their importance, however, there is little or no systematic data collection about volunteers and how their efforts interface with those of paid home care workers. Addressing these issues would strengthen the capacity of the home care sector to respond to the needs of Canadians.

As the importance of home care within the health system has grown, concerns about the current disparities in the home care labour force have increased. Home Care Development, Health Canada recently published the report Homan Resource Issues in Home Care in Canada: A Policy Perspective which can be found on the Health Canada website at http://www.hc-sc.gc.ca. The report provides and overview of the paid or formal home care workforce and the issues, such as attractiveness of home care work, wages and benefits, working conditions, training and supervision which underlie both access to and quality of home care services for Canadians.

5.4 Supporting Informal Caregivers

As previously mentioned, family members and friends play a unique role in home care. Yet they are also potential or actual clients of the home care system, with personal needs of their own.

Informal caregivers need ready access to information -- about available services, about their family member's condition, its prognosis and treatment. Health system restructuring in recent years has introduced rapid change to programs, policies, and organizational relationships in the health system. Potential home care clients and their family or friends providing care often do not understand how the system works or know where to go for advice and assistance about programs and services. This situation can be even more frustrating when family members are trying to organize care from a distance.

Informal caregivers in home care should be viewed by the formal care providers as a part of the care team. The relationship between formal care providers and informal caregivers may be an ambiguous one. In these situations, the informal caregiver is on his or her home ground and is therefore more inclined to assert himself or herself, yet the formal home care provider (particularly if a professional) has expertise on how particular tasks should be done or knowledge about what to expect for the care recipient with a particular condition and prognosis. Ideally, the relationship between informal caregiver and formal home care provider should be a collaborative one, but this is not universally the case in practice.

Informal caregivers may be shown how to do tasks that they have not freely agreed to do, and essentially are "conscripted" into providing particular types of care. They may feel uncomfortable with these expectations. Training to perform the tasks may not be sufficient, and there may not be anyone they can call on when things go wrong or they have questions related to this care. At the same time, the system would not be able to provide home care in a cost-effective manner without informal caregivers to provide some of the care, that would in institutional care, be done by staff.

Informal caregivers have individual limitations and preferences that affect the type and amount of care that they can be expected to give. They have needs that arise directly out of their care giving work. They may make personal and financial sacrifices in order to give care. Their own health and well-being may suffer as a consequence of the kind and amount of care they give.

Assessment tools commonly used to determine the amount and type of formal services to provide in the home do not all take into account the limitations and needs of informal caregivers. Caregivers may be assumed to be available and their own limitations not assessed.

Caregivers may need respite, counseling, peer support groups, and other supports to minimize any ill effects on their own health of the care giving they do.

Those informal caregivers, who provide the greatest amount of care are also likely to suffer an economic burden as a result of care giving. Increasingly, caregivers are finding that their duties are having negative repercussions on their paid work. There is growing pressure on governments and employers to consider ways to offset economic burdens for caregivers through financial compensation, through Employment Insurance, through more flexible work arrangements, and through elder care leave.

Some caregivers (often women) withdraw from the work force as a result of their caregiving responsibilities, foregoing current income and career development for a period of years. Future pension benefits may be reduced because of a period of absence from the work force. Additionally, there may be extra expenses associated with taking responsibility for giving care. These expenses may be clearly related to the care given, such as medications, equipment or the costs of respite or attendant care. Any of these kinds of costs may be borne in whole or in part by informal caregivers. There are other less direct monetary costs that may be associated with the caregiving, such as hiring someone to do housework or maintenance just to ease the overall burden of responsibilities carried by a caregiver who is now spending time in tasks such as giving personal care to the care recipient.

Supporting informal caregivers is a complex issue, in part because of the nature of care provided, the length of time over which care is provided, and the level of burden felt by the caregiver. All vary considerably from one caregiver to another.

The challenge in providing support to informal caregivers is to strike an appropriate balance between providing fair and adequate resources that encourage informal caregivers to continue to give care, without spending scarce program resources to the point of compensating people for what is in practice their normal way of doing things within the family or the community.

5.5 First Nations and Inuit care

First Nations and Inuit communities in Canada face high levels of injury, chronic disease and disability. Rates of hospitalization are two to three times higher among Aboriginal peoples compared with the general population. As a result, First Nations and Inuit communities have been particularly affected by hospital closures, early discharge programs, and the regionalisation of health care. By and large, the infrastructure to meet the growing demand for adequate, appropriate home care in First Nations and Inuit communities is not yet in place. First Nations and Inuit communities in the North and on-reserve need an infrastructure that will address their unique circumstances which include remote locations, lack of trained personnel, housing problems, and the need for culturally

The 1999 federal Budget announced $190 million dollars over the next three years to better meet the health care needs of First Nations and Inuit communities. The funding will be used to strengthen home and community care, and improve case management and other support services. As well, health information systems will be developed with First Nations communities, and better links made with provincial systems and public health surveillance programs.

5.6 Increased private sector involvement

There are several dimensions of private sector involvement in home care. First is the issue of publicly funded services by private sector providers. In some jurisdictions, the system is now one in which private sector agencies bid for a contract to deliver services on behalf of the public system to eligible clients. In these areas, a major quality issue becomes that of maintaining a level of quality in face of pressures within a system which awards contracts, not only on the basis of quality - but also on the basis of cost. As a result of the need to bid against other agencies on the basis of cost to deliver services to a population, both for-profit and not-for-profit home care delivery organizations are under pressure to hold salary and wage costs for staff to a minimum (because salary and wage costs are the most significant portion of the expenses of any home care agency). In return, because home care wages and

salaries are low in comparison with those in the institutional sector, there is a tendency for many workers (nurses and other professional staff, and unregulated workers) to move out of home care and into the institutional sector.

A second set of issues revolves around the public-private split in funding home care. Although data don't exist to clearly indicate the extent of private expenditures on formal home care services and because the demand for home care is growing, it is likely that the private sector share of home care funding is increasing or at least, not decreasing. To the extent that individuals are arranging for their own care or that of a family member in the open market for services, there is at least a potential quality problem to the extent that there is currently no system assuring quality in services which are privately purchased.

5.7 Services purchased directly by individuals and their families

As noted previously, there is little information about the extent to which individuals and their families purchase home care services privately, either paying entirely out of their own pockets or with reimbursement from third party insurance payers. Collection of such information is complicated by definitional issues. For example, is it private home care when a cleaning lady is hired to do housework for a frail elderly person ? Or is this the case only when a recognized home care agency is used ?

The 1998 Canada Health Monitor reports that approximately 46% (of 100) respondants indicated they were spending between $ 20 and $ 70 a week on home and community care services and about 18% or respondants are spending more than $ 70 per week.

Because of the uncertainty of definitions and the difficulty of collecting data on private home care expenditures, it is not clear how much private home care is reflected in the reports of total private health expenditures in Canada.

These definitional issues will take on increasing significance as home and community care become an increasingly larger part of health care delivery.

5.8 Services purchased by publicly administered programs

In recent months, concern has been expressed about the fact that in some provinces public funds are used to purchase home care services from private for-profit companies. This is not a new practice; one large company operating in several provinces has indicated that about 60% of their business comes from public programs. However, this concern appears to have

been heightened by the introduction in some provinces of a brokerage system of contracting

for home care services. There is a perception that for-profit companies are driving longstanding, highly respected non-profit organizations out of business.

Opposition to the use of public funds to purchase services from for-profit companies takes several forms. There are those whose principal objection is ideological, holding the view that health care should not be used to make profit. As more care which was once provided in the non-profit hospital sector shifts into the home, concerns emerge about the changing nature of the publicly funded Medicare system.

It is important to put this concern into context. Home care is by no means unique in using public funds to purchase services from for-profit companies. Among the many examples are private laboratories and X-ray centres. Perhaps the single largest example is the fact that for-profit drug stores are the vehicle through which provincial drug plans are delivered.

Others are concerned about the quality of care and the working conditions for home care workers. Labour is the largest single cost in the sector. Therefore, there is a fear that the only way to obtain profits from home care services is to reduce wages and benefits which are already traditionally low. This leads to concerns about recruitment, retention and the skill level of the work force, which, in turn, raises concerns about the quality of the care which will be provided. The counter argument offered is that competition will lead to innovation and increased efficiency, without a loss of quality.

The debate about the role of the private health care sector (both for-profit and non-profit) and the appropriateness of public funding of for-profit health care is an important one for the whole health care system. It will probably continue for many years. In the short-term, a more productive focus for home care could be on issues of ensuring quality of care for the client, appropriate working conditions for workers, and value for money for funders.

5.9 Data and Information systems

Although most provinces and territories have standardized their internal systems of client classification and data collection, there are significant differences across systems. These differences make it impossible to make needed inter-jurisdictional comparisons across Canada -- about who is receiving home care, how this care is being delivered, and with what outcomes.

There is increasing recognition of the potential value of sharing this kind of information across regions and provincial boundaries, facilitating the development of a shared knowledge

base on what works best in home care and related services. Without comparability of terminology, classification systems, and data classification categories, the potential benefits of sharing information across jurisdictions are diminished.

Further, analyses of the impacts of regional differences in policies and practices related to home care are more difficult, or impossible. Finally, lack of data or comparability of data hamper the development of an evidence base to support decision making related to home care.

Data comparability is necessary to ensure that this rapidly growing sector develops in a way which ensures that Canadians receive appropriate, high quality, cost-effective home care services, well integrated into the larger health care system.

Modern information technology also makes possible a wide range of applications that support the day-to-day operation of the health system. For home care to be smoothly integrated into the broader continuum of health care services today, the design and implementation of data and information systems that facilitate the linkages between home care and, for example, primary care or specialized hospital services are critical in building the integrated health system envisioned for the future.

Given the wide range of types of care and possible outcomes to be measured within home care, and the variety of links to be made with other parts of the health system, the development of comparable and adequate data and information systems for home care is a formidable task. Because home care encompasses both "cure" and "care," both short- and long-term care, and addresses the needs of disabled, frail or ill persons as well as the needs of their family members, the choice of data elements to be measured and recorded is potentially huge and burdensome for care providers.

Further, while it is self-evident that treatment and care decisions should be based on objective evidence as to what works best, in practice the interpretation of evidence is at best difficult. This is true even in an institutional setting and within narrow ranges of types of patient care. In home care -- where outcomes of interest may not be observable until years down the road, where outcomes of primary interest vary widely across different types of clients, and where many factors outside the control of the home care program may affect the observed outcomes -- the appropriate interpretation of data is particularly challenging. These factors make the thoughtful selection of data elements and the planning that ensures data comparability across systems all the more critical to the development of the home care sector.

6.0 Access to Home care services

6.1 Provincial Territorial similarites/differences

While all provinces and territories have home care programs, there is considerable variation among them. Such variation is understandable in a country as diverse in population and geography as Canada.

Most provincial and territorial public home care programs have moved to facilitate intake procedures for new clients by adopting a single point of entry system with referrals for services coming from a variety of sources, such as, hospitals or family physicians, the community. However, increased demand for service and, in some cases, limited availability of public funding for home care services may result in restricted or delayed access to services.

In addition, there are differences from province to province in client assessment procedures and in the eligibility criteria for services, which may also result in varying access to publicly funded home care services.

The recently released report Provincial and Territorial Home Care Programs: A Synthesis for Canada was prepared by Home Care Development, Health Canada with assistance from the members of the federal, provincial and territorial (F/P/T) Working Group on Continuing Care, a subcommittee of the F/P/T Advisory Committee on Health Services. The report describes the current status of home care from a national perspective.The intent of the report is to provide current, accurate information on home care in Canada and to make comparisons between jurisdictions based on eight factors related to organization, funding and service delivery.

The report also shows that all programs are currently in a period of growth and new development, relevant to other sectors of the health system. This alone accounts for some of the variation which exists among jurisdictions. At the same time, it indicates that home care is responding to changing demands according to client need and overall health system change.

6.2 Urban/rural differences

Many of the challenges facing the home care sector are magnified when the care must be provided in a rural setting. Frequently home care is needed following discharge from an acute care facility in another, often distant, community. This makes the continuity of care associated with a smooth discharge transition more difficult to achieve. Human resource

issues are also exacerbated in rural communities. The available labour pool is more restricted,

making recruitment more difficult. In addition the travel time between clients, for which workers may not receive reimbursement, is generally longer. This means that a worker must put in long hours in order to get paid for an eight- hour day and is one of the reasons why it is difficult to retain home care workers in rural communities.

6.3 Private expenditures

To the extent that individuals are paying for their home care services out-of-pocket, there may be an access to care problem for those who do not have sufficient income to hire all the services they need.

There is increasing use of private sector funding which involves not only individual, out-of-pocket spending, but also an increasing reliance on employer-provided supplementary health insurance benefits or privately purchased insurance plans. To the extent that there is increasing privatization of home care funding in this manner, there is also a potential access problem for those individuals whose employers do not provide supplementary benefits including home care, and for those who are self-employed or out of the labour force.

6.4 Mobility of Canadians

When Canadians travel or move from province to province, the provisions of the Canada Health Act assure them that medically necessary hospital and physician services will be available to them anywhere in Canada. This principle of portability of coverage of these insured services does not apply to other kinds of health services such as home care or institutional long-term care. Lack of portability of these extended health care services is increasingly problematic in an era of early hospital discharges and use of home care to deliver acute and post-acute care services. For example, individuals referred to a tertiary care hospital outside of their own province for specialized surgery may need to remain near the hospital for some time post-discharge with home care follow-up. In some cases, disabled people or the frail elderly in need of long-term care face barriers to interprovincial mobility because of waiting periods imposed in certain provinces before new residents become eligible for supportive home care services.

In a system in which home care is taking on increasing importance, the challenge will be to improve access to home care services across provincial boundaries in a way that continues to allow the flexibility needed for each province and territory to design policies and programs to serve its own unique needs within its particular health care system.

Any of these mobility issues, if addressed in the future, will need to be considered in light of the recent Social Union Framework agreed to by the federal government, nine provinces and the territories. The framework includes commitments to not erect any new barriers to mobility in new social policy initiatives and to eliminate within three years, any residency-based policies or practices that constrain access to health and social services.

7.0 Conclusion

This overview paper has sketched a picture of home and community care in Canada. By acknowledging some of the historical developments, pointing to the current realities and challenges as well as the urgent drivers of system change, it is hoped that the home care picture has been placed in a realistic and constructive context.

The need to improve home and community care to meet increased demands is clear, but meeting this challenge will be difficult, requiring the active informed participation of a wide spectrum of Canadians.

At the same time, these changes provide opportunities for exciting innovation and open new possibilities for the provision of acute and long-term care in home and community care settings.

This paper offers an overview of these and other matters. It is intended to provide a foundation for future dialogue and action necessary for home and community care to further evolve as a well-designed component of a fully integrated health care system.

Looking to the future, many questions remain to be addressed, including:

  • What are the values and standards that should underpin home and community care?
  • What kinds of home care services do Canadians need now, and in the future?
  • How can Canad ians be assured that the public home care system is evolving to meet their changing needs?
  • What are the building blocks that need to be put in place in order to build for the future?
  • How should home and community care services be financed ?

The work of the National Forum on Health, public opinion research and an ongoing public debate has made it clear that Canadians are calling for a renewed health care system for the 21st century.

At the same time, they want the system to continue to reflect and respect the values that led to the creation of the health care system of today.

It is clear that Canadians expect that governments, providers, professionals, business, labour and the public will work together to advance the home and community care sector as a component of an integrated system of care -- one that encompasses institutional, community, and home-based care.

(1) Policy and Consultation Branch. National Health Expenditures in Canada, 1975-1996. 1997

(3) Chappell, N. L. Social Support and Aging. Toronto, Butterworth, 1992.

(4) Canadian Study on Health and Aging Working Group. Patterns of caring for People with Dementia in Canada. Canadian Journal on Aging 13(4). 1994.

(5) Hebert, Réjean et al.'Évaluation de l'efficacité d'un programme de prévention de la perte d' autonomie: rapport de recherche'.' 'Institut universitaire de gériatrie de Sherbrooke', Sherbrooke, 1998.

6 Health Services Utilization and Research Commission (Saskatchewan). Hospital and Home Care Study. Summary Report No. 10 March 1998. DeCoster, Carolyn, Peterson, Sandra and Kasian, Paul.

(7) Statistics Canada, Population Projections for Canada, Provinces and Territories 1993-2016. Catalogue no. 91-520, 1994.

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