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May 12, 2021 · N.W.T. seniors often move vast distances for care. Some elders want support to age in place, with loved ones; How a program from Kingston can alleviate isolation among Toronto's seniors
Jun 25, 2024 · These activities led to the key findings and recommendations outlined in this report. These findings and recommendations provide insights into the services, support, strategies, and solutions that make it possible to age at home in Canada and achieve or maintain quality of life as we age in Canada.
- Overview
- Table of Contents
- 1.0 Introduction
- 2.0 Background
- 3.0 Definitions
- 4.0 Methods
- 5.0 Findings
- 6.0 Discussion
- 7.0 Recommendations
- Footnote.
June 2006
ISBN: 978-0-662-46351-1
This report was prepared for the Home and Continuing Care Unit of the Health Care Policy Directorate, Health Canada
The views expressed herein do not necessarily represent the official policy of Health Canada
•1.0 Introduction
•2.0 Background
•3.0 Definitions
•4.0 Methods
•5.0 Findings
•5.1 Veterans Affairs Program
This report for Health Canada describes publicly funded, self managed home care programs at federal, provincial and territorial levels across Canada. In contrast to conventional home care programs in which care is managed and delivered by professionals or agencies on behalf of the client, in self managed programs the client takes a more active and central role both in defining needs and in determining how those needs should be met. A key characteristic of many self managed programs is that instead of funding professionals or agencies who deliver services to clients, governments directly fund clients who then purchase services from providers of their choice. A variety of clients currently use self managed home care programs including; children and families with continuing care needs, adults with physical disabilities, adults with chronic illnesses, and adults with developmental disabilities.
The major objectives of this report are to identify and describe self managed home care programs currently available across Canada through a review of Canadian literature over the past 5 years (2000-2005), a review of government websites, and a series of semi-structured telephone interviews with key informant at federal, provincial and territorial levels. The overall aims, as identified by Health Canada, are to determine:
•how eligibility for self managed care is assessed
•how self managed home care is related to consumer demand
•the likelihood of an increase in demand for self manage home care, and if so, why
•whether other issues such as program cost-containment are significant
Traditionally home care in Canada has been provided to adults, seniors and children with acute and chronic illnesses or disabilities by health care professionals (such as doctors or nurses) or home care agencies (such as the Victorian Order of Nurses). Service users are usually assessed by a social worker or health care professional and a plan of care is developed. This model of home care fits under what has been termed a "medical model" in the sense that the patient (patiently waiting) is dependent on expert knowledge and skills both to assess needs and to deliver services For instance, in Ontario until the mid-1990s, home care services, even non-medical services like homemaking, were accessed only by referral from a physician.
In contrast, an alternate model which has slowly been growing in popularity in Canada since the 1970s, is the self managed care model (Salisbury and Collins, 1999). This model assigns the individual requiring care a more active and central role both in determining care needs and managing care. While individuals as "clients" or "consumers" may still access health care professionals including doctors, the overall care process is guided by the individual who in effect becomes the expert in their own care. The philosophy behind self managed care lies in the Independent Living Movement of the 1970's which states that people with disabilities should have the same civil rights, options, and control over choices in their lives as do people without disabilities (McDonald and Oxford, 2006). Thus, self managed care aims to give individuals the option of self-directing their care and the freedom to make their own choices (Bach, 1998).
A groundbreaking self managed care program was created in 1997 in British Columbia. A group of parents now known as the Woodland's Parents Group whose children had been institutionalised in a large facility called Woodlands School lobbied the British Columbia government for funds to support their children in the community. We note here that Woodlands School was operated by the province from 1878 to 1996; it was subsequently closed due to allegations of physical and sexual abuse. Admissions were made under the statutory authority of the Province's mental health legislation, child welfare legislation or as voluntary committals "for persons with mental disorders who required care, supervision and control for their own protection or welfare or the protection of others..." Reflecting a particular historical view of the nature and status of individuals with mental disabilities, Woodland residents were labeled "mentally retarded;" they lived in a highly structured and regimented environment away from their families (McCallum, 2001). As an alternative, the Parents Group believed that if money from the government were allocated directly to individuals, their children could live more dignified and autonomous lives in the community. In 1997 the Community Living Society was formed to assist individuals to leave Woodlands School and acquire needed supports to live within the community (Salisbury and Collins, 1999).
Such initiatives have given impetus to an apparent rise in public support for self managed care which is justified both as a step both toward empowering individuals, and gaining system-level efficiencies. For instance, in October 2002, the Report of the Community Living Transition Steering Committee to B.C.'s Minister of Children and Family Development, recommended that the government give greater emphasis to "individualised funding," a variant of self managed care, in which funds are "allocated directly to individuals, or in the case of children, to their parents or guardians, to provide the support necessary to meet disability-related needs, and to assist individuals to become contributing citizens" (p. 25). This reflects the philosophical tenets of self-managed care: individual agency and choice. The report elaborates this philosophy by stating that individualised funding "introduces a market dynamic anchored in consumer choice that then leads to improved service quality, reduced inefficiency, lower costs and better value for money than block funded services. In addition, individuals and families who receive Individualized Funding have very high satisfaction levels because they are empowered to direct their own lives".
Before proceeding further, it is useful to define key terms used in this report.
Consumer The term consumer refers to the individual requiring care. This may include individuals with physical or developmental disabilities, chronic illness or frailty. Note that the term consumer is linked to the economic ability to purchase goods and services in health care markets. Rather than having care managed for them as "patients," and being dependent on the expertise and judgements of "expert" care providers, consumers take a more active role in determining their own needs and managing their own care, facilitated by a direct transfer of funding which allows them, or their delegates, the freedom to make choices. Consumers in effect, become the "experts." In the case of self managed care programs the consumer thus often takes on the role of direct employer of the care provider and they assume the responsibilities of an employer which may include:
•managing money, time and personnel
•applying for a business number from Revenue Canada
•making payroll deductions related to CPP, EI, Income Tax, WSIB
•keeping records for employer/employee tax purposes
As noted, we employed multiple research methods including: a search of the relevant literature; a search of government websites, and semi-structured telephone interviews with key informants across Canada.
The literature search strategy, conducted by a bilingual research assistant, consisted of a systematic review of documents using Scholar's Portal, MEDLINE, Google Scholar and Google. The following terms were searched in each database: self managed care, self-managed care, self managed home care, self-managed home care, individualised funding, individualized funding, direct funding, consumer directed care, consumer directed home care, personal attendant services, personal attendant care services, personal attendant home care services, self-determination, self determination. French terms searched in these same databases include: financement individualisé, financement direct, courtage de services, services autogérés de préposés aux soins, allocation(s) directe(s), le programme d'allocations directes, allocation personnalisée.
As well, a review of the government websites for each province and territory in Canada was conducted using the same search terms as stated above; French terms were used for the government of Quebec website. Documents retained for review included those that either described or evaluated self managed care programs in Canada. Programs included in this review were ongoing within the last five years, and are publicly funded at either the federal, provincial or territorial level.
Key informant interviews were conducted with a representative from each province and territory in Canada. An attempt was made to contact a representative from every self managed care program we identified in Canada. On average, 3 - 5 phone calls per program were attempted, for a total of approximately 67 phone calls over the course of the interview process. Representatives were individuals with detailed knowledge of the self managed care program(s) in their province. The majority of key informants were either representatives from the ministry that funds and regulates the program(s) or representatives from the agency that administers the program such as the Local Independent Living Centre (CILT) or Regional Health Authority (RHA). A series of questions (see Appendix 2) were asked of the key informants in order to clarify details of the program and seek opinions about the challenges and issues facing the program.
We identified 16 documented self managed home care programs in Canada. Programs vary significantly in terms of population served, degree of self determination, and funding mechanism. Below, we briefly describe each of these programs by jurisdiction. Appendix 1 summarizes key information about each program in chart form, also by jurisdiction.
Note, that the 16 programs we identified likely underestimates the actual number of current programs for two reasons. First, programs that did not appear on public websites and were not identified by key informants are not included.
Second, while we included programs that provide funding for personal care and daily living needs, we did not include those that provide funding solely for equipment, respite care or education. This eliminates some programs for children which have an element of self management but do not involve personal care. For example, British Columbia offers two programs for children under 18 years which provide, respectively, educational interventions, and respite and supplies. The Autism Under Age 6 and Autism Funding Ages 6 - 18 program provides funding to families for therapeutic activities that will enable early educational intervention or supplement school based programs for their autistic children. The At Home program provides funding directly to families with children under age 18 with disabilities specifically for respite services or incontinence supplies. Likewise, Ontario's Special Services at Home (SSAH) Program provides funding of up to $3000 per year for children with a developmental or physical disability and adults with a developmental disability if they have an ongoing functional limitation and require support beyond that which is a normal family responsibility. This funding is administered through Ontario's regional Community Care Access Centres (CCACs) and may be provided for personal development and growth, which could include helping a person acquire new skills and abilities (for example, communications skills) or family relief and support including respite, and supplies and equipment. In order to qualify consumers (individuals or parents) must provide detailed justifications how they will use the money. In December 2005, there were policy changes to allow primary caregivers to use their SSAH funding to compensate some family members for respite and/or personal development and growth.
We did not find any self managed care programs in the three Territories, or through the Department of Indian and Northern Affairs or Health Canada, First Nations and Inuit Health (personal communications).
6.1 Access to Program Information
A first major finding is that in all jurisdictions it proved difficult to access information about self managed care programs. Information is not easily found on most provincial and territorial websites and posted contact information is often incorrect or out of date. There is a significant lack of knowledge among front line workers about self managed care programs and the referrals they provided to gather details about the program were often incorrect. Interestingly, some administrators of self managed care programs are unaware of similar programs in other Canadian jurisdictions and even in their own jurisdiction. For example, staff at Choices for Supports in Independent Living in British Columbia were unaware of the Vela Microboards program in the same province, and staff at the Disability Issues Office in Manitoba were unaware of the In the Company of Friends program in Manitoba. We emphasize that this is not a criticism of our respondents; rather it emphasizes the lack of any systematic framework for gathering and communicating relevant information across Canada. In addition to making it difficult to document and assess current programs, or to share best practices, the problem of accessing relevant information is likely to pose a significant barrier for consumers, particularly those experiencing cognitive, language, or functional challenges.
6.2 Need for Program and Family Support
Program Support While self managed care programs are seen to offer consumers potential for greater choice and autonomy, and for more efficient use of available resources (see below), individuals with functional deficits may still require assistance to make managed care work for them and to fulfill their responsibilities as managers and employers. Some respondents questioned whether adequate program supports were available to support consumers as they purchased services on their own behalf in markets where services were often difficult to find or in short supply. For example, in Alberta, Bruce Uditzky, the Executive Director of Alberta Association for Community Living has gone on record openly criticizing the individualised funding program (Lord et al., 2000). His concerns include the lack of program supports which have been put in place to assist consumers using individualised funding. Without adequate supports consumers may be forced to give their individualised funding to agencies which in effect, manage for them, effectively eroding the principle of personal agency, and potentially, increasing costs. Access to Family Support Where consumers do not have full functional capacity, they may have to rely on family members to assist. However, respondents noted that family members may not always be prepared to assume responsibility for managing funding or employing caregivers. In Saskatchewan two consumer representatives mentioned that consumers with developmental disabilities have difficulties accessing the individualised funding program due to the heavy responsibilities placed on family members.
6.3 Eligibility
Eligibility criteria for the programs we reviewed vary considerably both between and within jurisdictions across Canada. Common criteria for all provincially funded programs include the requirement that the consumer must be a resident of the province in which the program is offered and be eligible for insured health care services. Eligibility for current programs usually also depends on the age of the consumer, their ability to self manage whether due to a developmental disability or frailty, and financial status, although specifics vary widely. Moreover, programs differ substantially regarding the degree of third party involvement: while some programs explicitly require a family member, friend or support group to assist in managing care, others focus responsibilities on the consumer. Programs which cater to individuals with developmental disabilities often require a family member or support group to take on responsibility for managing care and including the responsibilities of employer. There is also considerable variation in the process of assessing eligibility and needs. In some cases, assessment is done by a professional; in others, consumers have a more active and participatory role. In Alberta, the Self Managed Care Program requires that an occupational therapist conduct an assessment to determine hours of care per week. In Prince Edward Island workers from the Department of Social Services and Seniors use a standardised assessment tool to determine first if the individual is financially eligible and then how much funding the individual is eligible to receive. In contrast, Ontario's Self Managed Attendant Service Funding Program (for individuals with physical disabilities) uses a consumer based model where current consumers in the program sit on boards and participate in the assessment process. Applicants attend an interview with the board and the group determines together what the applicant's needs are and how much funding they will receive. In Manitoba, staff from 'In the Company of Friends', in partnership with a support network, work with consumers (individuals with developmental disabilities) to create an individual service plan.
7.1 Establish a National Inventory of Self Managed Care Programs
Our first recommendation aims at establishing a national inventory of self managed care programs as a resource for policy-makers, consumers and providers. A good model for such an inventory is found in the work done by the Canadian Home Care Association (CHCA) and Health Canada which resulted in the 1998 report titled "Portraits of Canada: An Overview of Public Home Care Programs" subsequently updated in 2003 by CHCA. This report identifies key dimensions of conventional home care programs which could be adapted to document and assess self managed programs across Canada. This would provide not only an integrated information base for the latter, but the ability to make comparisons between conventional and self managed programs and to assess possible shifts of resources and consumers between program types. Key dimensions identified in the 2003 version of "Portraits" are: Governance and Organization (for example, legislation) Services (for example, client eligibility, fees, service limits, guidelines, funding, program costs, service delivery models, utilization) Quality and Accountability (for example, quality measures, accreditation, information systems, referrals) Provincial and Territorial Initiatives (for example, emerging or planned programs) Challenges
7.2 Synthesize and Transfer Knowledge About Self Managed Care
Our second related recommendation emphasizes the need to gather, synthesize and transfer national and international knowledge about self-managed care programs. Currently, it is almost impossible to answer basic questions about the costs and outcomes of self managed care programs alone, or in comparison to conventional home care programs. Because existing Canadian evidence tends to focus on novel initiatives for specific target groups using a variety of methods and approaches, it is difficult to know to what extent it can be generalized. What evidence we could find looks promising: under specific circumstances, self managed care programs may produce favourable outcomes for individuals (for example, independence and quality of life) and for health and social care systems (for example, cost efficiency and cost containment). However, given the current reality of stretched budgets, growing demand, and an increasing emphasis on evidence-based decision-making, policy-makers are likely to be reluctant to support self managed home care options without a stronger evidence base. We suggest two steps. The first is to gather and synthesize available evidence nationally and internationally. While there appear to be few relevant peer-reviewed research articles in Canada, we identified a growing "grey literature" which includes unpublished program evaluations. In addition, there appears to be a growing international literature which may provide transferable information to lead both the design and evaluation of Canadian programs. The second step is to establish effective means for transferring relevant knowledge to the field. We note here that major national funding agencies including the Canadian Institutes of Health Research (CIHR) and the Social Sciences and Humanities Research Council of Canada (SSHRC) have recently emphasized the crucial need not only to generate new knowledge, but to transfer existing knowledge to those who can best use it. This entails not only designing user-friendly means of synthesizing and presenting research findings, but the establishment of knowledge networks involving partnerships of researchers, consumers, policy-makers and providers. Many good examples exist including the Children and Youth Home Care Network (CYHN), sponsored by SickKids Foundation, and the recently established Canadian Research Network for Care in the Community (CRNCC), based at Ryerson University and the University of Toronto, both of which aim to transfer relevant evidence and best practices about community-based care to the broader policy community, and in the process, to stimulate support among decision-makers for investments and innovations.
7.3 Establish a Forum for Sharing "Innovations" and "Best Practices"
Our third recommendation, building on those above, emphasizes the need to transfer knowledge specifically about "innovations" and "best practices" which moves beyond identifying challenges and barriers, to formulating possible solutions. The need to develop and communicate "lessons learned" as tools for overcoming problems is now well established in many health care fields. Particularly under conditions of growing demand for costly services, but limited resources, there is seen to be a clear need to minimize costs while improving outcomes. For example, recent work on mental health and substance use disorders for Health Canada (2002) emphasizes the merit of such a constructive approach. Here, two distinctions are useful. First, while "best practices" are often defined as integrating scientific evidence or expert consensus, "innovations" may be defined more broadly to include novel approaches to care which may not yet be fully evaluated (Health Canada, 2002). In this connection, we suggest that particularly where a knowledge base is underdeveloped, as is the case in self managed home care, the documentation and dissemination of innovations can also play an important role both by identifying common or emerging problems, as well as novel (even if not fully validated) strategies or approaches for addressing them. Second, while best practices often tend to be concentrated at the clinical level (for example clinical practice guidelines (CPGs)), problems and gaps clearly occur at clinical, organizational, and system levels. We suggest that with respect to self managed care, systems level best practices and innovations may be particularly important given that structures and supports need to be put in place at this level to facilitate individuals managing their own care.
As we were finalizing this report, a study released in April, 2006, on individualized funding in Ontario, came to our attention (Lord, Kemp and Dingwall, 2006). This new study is part of an expanding "grey literature" on self managed care in the sense that it is not published per se, although it is available on a project website. We happened to find it by chance as we sought to clarify key points in our report. While this new study was not available when we did our analysis, we note here that its main conclusions are consistent with our own: individualized funding programs can produce positive outcomes including high levels of satisfaction for consumers and their families, and improved quality of life for consumers.
The fact that our key informants did not alert us to this study, and that in effect we chanced upon it, underscores the importance and relevance of our recommendations which emphasize the need to gather systematic information on self managed care, and to find innovative ways to transfer relevant and emerging knowledge to decision-makers at individual, organization, and systems levels.
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