A National Snapshot of Home Support from the Consumer Perspective

Enabling People with Disabilities to Participate in Policy Analysis and Community Development

February 2005

Co-Principal Investigators:

Kari Krogh, Ph.D.
Canadian Institutes of Health Research Senior Research Fellow and Assistant Professor
School of Disability Studies
Ryerson University
Toronto, Ontario

Mary Ennis
Chairperson, Health Reform Committee
Council of Canadians with Disabilities
Winnipeg, Manitoba

Document prepared by Jon Johnson and Victoria Bowman in collaboration
with the Research Team and the Data Analysis Team

For copies of this report or further information please contact CCD at:

Phone: (204) 943-4757 (TDD) or 1-866-947-0303 (toll-free)

E-mail: ccd@ccdonline.ca

Website: http://www.ccdonline.ca/

Acknowledgements

We would like to acknowledge the contribution of all the participants with disabilities from across the country who shared their expertise, experience, time, analysis, and recommendations with us. Thank you to those individuals from northern, remote, First Nations and Inuit areas who assisted us in understanding their unique circumstances. We would also like to acknowledge the expertise offered by disability organizations, regional coordinators and members of the data analysis team. Thanks to everyone who participated.

The National Snapshot of Home Support from the Consumer Perspective received a grant from the Social Development Partnership Program of Social Development Canada administered by the Council of Canadians with Disabilities. This project was also supported by a Standard Research Grant from the Social Sciences and Humanities Research Council and a Canadian Institutes of Health Research grant and personnel award to Dr. Kari Krogh.

The principal investigators wish to acknowledge contributions of Cathy La France and Harry Beatty and extend a special thank you to Maureen Colgan, Jon Johnson and especially Victoria Bowman.

Project Personnel

Co-Principal Investigators

Kari Krogh, Ph.D.
Canadian Institutes of Health Research Senior Research Fellow and Assistant Professor
School of Disability Studies
Ryerson University
Toronto, Ontario

Mary Ennis
Chairperson, Health Reform Committee
Council of Canadians with Disabilities
Winnipeg, Manitoba

Project Coordinators

Maureen Colgan
Victoria Bowman

Research Team

Mary Ennis, National SnapshotProject Co-Principal Investigator; Chairperson, Health Reform Committee, Council of Canadians with Disabilities

Kari Krogh, National SnapshotProject Co-Principal Investigator; CIHR Senior Research Fellow; and Assistant Professor, School of Disability Studies, Ryerson University

Laurie Beachell, National Coordinator, Council of Canadians with Disabilities

Special Advisors to the Research Team

Gordon Argyle, Home Support Action Group Volunteer Coordinator
Paul Gauthier, Consumer Advocate and Home Support Expert

Senior Research Assistant

Victoria Bowman

Data Analysis Team

Gordon Argyle, Home Support Action Group Volunteer Coordinator

Harry Beatty, Barrister and Solicitor
Paul Gauthier, President, PACT Consulting and Enterprises Ltd.

Michael Huck, Social Policy Working Group, Council of Canadians with Disabilities
Jon Johnson, Ph.D. student, Joint Program in Communication and Culture, York University
Cathy La France, M.A., Collaborative Learning Strategies Inc.
Mary Reid, Executive Director, Independent Living Resource Centre, St. John's, Newfoundland and Labrador
Joseph Theriault, PACT Consulting and Enterprises Ltd.
Marie White, National Chairperson, Council of Canadians with Disabilities

Provincial/Territorial Research Coordinators

Christine Gordon, Coordinator, BC Coalition of People with Disabilities
Tracie Matthiessen, Public Education Coordinator, Alberta Committee of Citizens with Disabilities
Alison Schmidt, Saskatchewan Voice of People with Disabilities
Maureen Colgan, Council of Canadians with Disabilities, Research Coordinator for Manitoba
Leah Bottos, People United for Self-Help in Northwestern Ontario (PUSH Northwest)
Daniel Hubert, Consultant, Confédération des Organismes de Personnes Handicapées du Québec

(COPHAN)

Teresa MacKinnon, Prince Edward Island Council of the Disabled
Anna Tillett, Contract Researcher, Nova Scotia League for Equal Opportunities
Randy Dickinson, Executive Director, New Brunswick Premier's Council on the Status of Disabled Persons
Mary Ennis, National SnapshotProject Co-Principal Investigator; Chairperson, Health Reform Committee, Council of Canadians with Disabilities; and Executive Director, Newfoundland and Labrador Coalition of Persons with Disabilities<<br /> Christine Smith, Contract Researcher, Yukon Council on Disability
Annelies Pool, Contract Researcher, Northwest Territories Council of Persons with Disabilities
Betty Daley and Arlene Hache, Women in the North Generating Solutions (WINGS), Research Coordinators for Nunavut.

Project Consultants

Cathy La France, Métis and First Nations Interviewer and Advisor
Craig Jones, Social Program Evaluation Group of Queen's University, Template Reviewer
Harry Beatty, Policy Advisor

Table of Contents

Acknowledgements............................................................................................................. ii

Project Personnel................................................................................................................. iii

People with Disabilities Speak about Home Support.................................................... ix

Executive Summary............................................................................................................ x

1 Introduction............................................................................................................. 1

1.1 Structure of the Report................................................................................... 1

1.2 Who Requires and Receives Home Support?................................................. 2

1.2.1 People requiring support.................................................................... 2

1.2.2 People receiving support.................................................................... 2

1.3 Home Support: A Lifeline............................................................................. 3

1.4 Why Research Home Support Policy?........................................................... 4

1.5 Terminology: Home Support, Consumer and Disability............................... 5

1.5.1 Home support.................................................................................... 5

1.5.2 Consumer........................................................................................... 5

1.5.3 Disability............................................................................................ 6

2 Methodology............................................................................................................ 8

2.1 Identifying the Need for a Study from the Community.................................. 8

2.1.1 CCD guiding principles..................................................................... 8

2.2 The Beyond Four WallsPilot Study.............................................................. 9

2.3 Philosophical Roots of Inquiry: Using Participatory Methods...................... 10

2.3.1 Social model of disability................................................................... 10

2.3.2 Participatory Action Research............................................................ 10

2.3.3 Emancipatory Research...................................................................... 12

2.4 Data Collection Methods................................................................................ 13

2.5 Challenges and Limitations............................................................................ 16

3 Impact of Home Support on People with Disabilities........................................ 19

3.1 Quality of Service, Quality of Life and Citizenship........................................ 19

3.2 Types of Home Support Services................................................................... 20

3.3 Who Provides Home Support Services?........................................................ 20

3.3.1 Formal support................................................................................... 20

3.3.2 Informal support................................................................................ 21

3.4 Location of Home Support Services............................................................... 21

3.5 Home Support Enables the Attainment of Life Goals..................................... 22

3.5.1 Setting goals in everyday living.......................................................... 22

3.5.2 Work.................................................................................................. 23

3.5.3 Family life.......................................................................................... 24

3.5.4 Social life........................................................................................... 24

3.5.5 Health................................................................................................. 25

3.5.6 Citizenship......................................................................................... 25

3.6 Criteria for Good Quality Home Support....................................................... 26

3.6.1 Consumer control............................................................................... 26

3.6.2 Relationship with home support worker and agency..........................28

3.6.3 Well-trained staff............................................................................... 31

3.6.4 Adequate resources for home support service....................................32

3.7 Summary........................................................................................................ 33

4 Home Support in the North: Context, Issues, and Recommendations............... 34

4.1 Context........................................................................................................... 34

4.1.1 Close communities............................................................................. 34

4.1.2 Different conception of health and home support...............................34

4.1.3 Attempts to impose Southern ways....................................................35

4.1.4 Informal policies................................................................................ 35

4.1.5 Unique features of assessment tools.................................................. 37

4.2 Issues............................................................................................................. 38

4.2.1 Lack of human resources................................................................... 38

4.2.2 Limited training opportunities............................................................ 39

4.2.3 High cost of living in the North.......................................................... 39

4.2.4 Consumers must travel South for specialized care..............................39

4.2.5 Inaccessible environment.................................................................... 40

4.2.6 Translation......................................................................................... 42

4.2.7 Insufficient services available............................................................. 43

4.2.8 Jurisdictional issues........................................................................... 44

4.2.9 Confidentiality.................................................................................... 45

4.3 Recommendations.......................................................................................... 46

4.3.1 Support elders' and others' desire to stay connected with

culture, community and land............................................................... 46

4.3.2 Develop culturally sensitive training programs and recruitment

programs for home support workers that emphasize the

importance of maintaining confidentiality........................................... 47

4.3.3 Develop training and codes of conduct for interpreters......................47

4.3.4 Pay family members for caregiving.................................................... 48

4.3.5 Develop policies for the North in the North.......................................48

4.3.6 Health care must remain free for members of First Nations bands.....48

4.4 Summary........................................................................................................ 48

5 Consumer Perspectives on Home Support: Issues and Recommendations.....50

5.1 Assessment and Eligibility............................................................................. 51

5.1.1 Assessment and eligibility recommendation:

Broaden the criteria for eligibility and the definition of health............53

5.1.2 Assessment and eligibility recommendation:

Make the assessment process comfortable and accessible..................54

5.1.3 Assessment and eligibility recommendation:

Reduce mandatory reliance on informal supports...............................55

5.1.4 Assessment and eligibility recommendation:

Respect and accommodate life choices, goals and development..........56

5.2 Regionalization and Portability....................................................................... 57

5.2.1 Regionalization and portability recommendation:

Maintain service levels between regions.............................................58

5.2.2 Regionalization and portability recommendation:

Tie services to the user, not the home.................................................59

5.3 User Fees....................................................................................................... 59

5.3.1 User fees recommendation:

Abolish user fees for home support services......................................61

5.4 Appeal Mechanism......................................................................................... 61

5.4.1 Appeal mechanism recommendation:

Appeal mechanisms should be legislated............................................63

5.4.2 Appeal mechanism recommendation:

Appeal mechanisms should operate in good faith...............................63

5.4.3 Appeal mechanism recommendation:

Appeals should beindependent, impartial and confidential................. 64

5.4.4 Appeal mechanism recommendation:

Appeal procedures should be public and accessible...........................64

5.4.5 Appeal mechanism recommendation:

Facilitate collaboration or negotiate compromise................................65

5.5 Staff Training and Administration.................................................................. 65

5.5.1 Staff training and administration recommendation:

Government should oversee home worker training

and standards..................................................................................... 68

5.5.2 Staff training and administration recommendation:

Involve and remunerate consumers in worker training........................68

5.5.3 Staff training and administration recommendation:

Training should include an Independent Living focus........................69

5.5.4 Staff training and administration recommendation:

Training should include a client-specific orientation...........................70

5.5.5 Staff training and administration recommendation:

Ensure standards in first aid, fitness and effective

communication................................................................................... 70

5.5.6 Staff training and administration recommendation:

Conduct background checks.............................................................. 71

5.5.7 Staff training and administration recommendation:

Regulate and minimize staff turnover.................................................72

5.5.8 Staff training and administration recommendation:

The need for back-up support............................................................ 73

5.6 Direct Funding............................................................................................... 73

5.6.1 Direct funding recommendation:

Make direct funding programs universally available...........................76

5.6.2 Direct funding recommendation:

Direct funding should be flexible and consumer controlled...............76

5.6.3 Direct funding recommendation:

Program should accommodate exceptional circumstances..................77

5.6.4 Direct funding recommendation:

Educate direct funding consumers and assessors...............................77

5.6.5 Direct funding recommendation:

Fund benefits, insurance and vacation pay

separately from service hours............................................................. 78

5.7 Unionization................................................................................................... 78

5.7.1 Unionization recommendation:

Create conflict resolution committees................................................. 80

5.8 Privatization.................................................................................................... 81

5.8.1 Privatization recommendation:

Invest in public health system while also providing

choice to consumers........................................................................... 83

5.9 Placing Home Support Policy Recommendations into Policy

and Program Context..................................................................................... 83

5.10 Canada Health Act or National Home Support Act?......................................84

5.11 A Call for a National Strategy........................................................................ 86

6 Discussion and Conclusion................................................................................... 88

6.1 Understanding the Cuts to Home Support Services....................................... 88

6.2 The Marginalization of Consumer Perspectives............................................. 91

6.3 What Consumers Have to Say about Home Support.....................................94

6.4 Areas for Future Research.............................................................................. 95

7 References................................................................................................................. 97

8 Appendices………………………………………………………………………... 104

A. Home Support Policies Template...................................................................... 104

B. Criteria for Identifying Individual Interview/Online Survey Participants,

Focus Group Participants, and Individuals to be Videotaped............................. 116

C. Individual Interview/Online Survey Questions.................................................. 118

D. Suggested Format for Focus Groups: Guidelines for

Provincial/Territorial Coordinators.................................................................... 121

E. Videotape Guidelines........................................................................................ 123

F. Informed Consent Agreement: Interviews/Online Surveys,

Focus Groups, Videotape Demonstrations........................................................ 125

People with Disabilities Speak about Home Support

I'm not a widget and I'm not a wrench, a screw on an assembly line that gets turned by a bunch of people. I don't like to feel that way and often that's how you feel, if you get the wrong people doing things for you. (Interview participant from Prince Edward Island)

When do you know home support is working well? Your needs in relation to your disability are met so that you can pursue your life instead of your survival. (Interview participant from Ontario)

Disabled people do not like to think of themselves as "being looked after," but they know they are people who need help to look after themselves. This subtle difference is picked up on and accepted by those who give good quality home care! (Interview participant from Manitoba)

We are the only sector of society that has to pay to have a bath. There should be no user fees for basic needs no matter what level of income you have. (Interview participant from Saskatchewan)

Executive Summary

This research project represents a joint effort between the Council of Canadians with Disabilities and the School of Disability Studies at Ryerson University. Both parties shared an interest in conducting a national study of home support (home care) policy and service that emphasized the perspectives of individuals with disabilities who require the service.

Thirteen research sites were established with regional coordinators in each province and northern territory. A national meeting of regional coordinators was called to review and refine data collection tools and procedures. Data was then collected about stated policy within each region. In addition, individual consumers of home support service contributed their experiences and insights through online surveys/interviews, focus groups and videotaped demonstrations or discussions. These data were coded by three researchers with ongoing input from the research team. Initial data summaries prepared by the research team were further analyzed by members of the data analysis team.

Consumers across Canada described home support not only as a determinant of health and quality of life, but also as a requirement for reaching their human potential, attaining life goals and exercising full citizenship. Good quality home support for many was characterized by consumer control regarding caregiver, schedule, location and type of service. Well-trained staff who valued consumer expertise and respectful relationships were also described as essential components of quality home support.

Participants in the Northwest Territories, Yukon and Nunavut described unique cultural and geographic factors that influenced quality and availability of service. The climate (temperature, snow, ice) and remote community locations were described as reducing physical accessibility, with some individuals with disabilities having to move or travel south regularly for health care. Many spoke of the shortage of qualified personnel. They spoke of the need to increase training programs and for family members to be compensated for providing support. Receiving services in an appropriate language with professional interpreters was also identified as critically important.

The jurisdictional issues between territory, province, federal government, First Nations reservation, and self-governed territory in the case of Nunavut were identified as complicating factors that interfered with home support service delivery and resulted in some individuals receiving no service. Remaining connected to culture, community and land through the provision of home support were also identified as a priorities to be fostered in home support service policy and practice.

The discussion that follows includes an analysis of the social, economic and ideological factors that influence home support policy. Drawing on quotes from participants across Canada, issues are discussed and recommendations proposed related to: assessment and eligibility; regionalization and portability; user fees; appeal mechanisms; staff training; direct funding; and unionization and privatization. Recommendation highlights include:

• Broaden eligibility requirements and definition of health;

• Maintain services between and within provinces/territories;

• Abolish user fees;

• Legislate arms-length appeal mechanisms;

• Involve and remunerate consumers in home support worker training;

• Make direct funding programs universally available.

The pros and cons of addressing home support policy and service concerns within a revised version of the Canada Health Act versus a separate National Home Support Act are presented. A holistic approach to addressing policy issues related to disability supports, it is argued, is essential. Home support is inextricably linked to other programs and policy areas such as accessible housing, transit and employment. In some instances, these programs and policies are clearly working at cross purposes to create dependence rather than opportunities for people with disabilities. Political, economic and ideological factors that have shaped home support policy and service are explored as are the mechanisms that operate to marginalize consumer input. An approach that is inclusive of consumer participation requires challenging the aspects of policies, service programs and practices that create or maintain systemic barriers for people with disabilities.

In summary, people with disabilities want a level and range of quality home support service that will enable them to satisfy their basic life goals through self-direction, quality of life, and community participation.

A National Snapshot of Home Support

from the Consumer Perspective

Enabling people with disabilities to participate

in policy analysis and community development

Final Research Report

1 Introduction

1.1 Structure of the Report

Participants in this national study identified critical issues in home support policy and offered recommendations for how policy and opportunities for consumer participation could be improved. In the first section we provide some background describing how the project originated as well as the definitions for the central concepts of home support, consumer, and disability. In section two we present the philosophical roots of this participatory research project, the methodology undertaken, and specific challenges faced as we undertook the project.

Within section three, we detail the impacts of home support services and policy on the lives of individuals with disabilities. We examine the types of home support services available across the country, the location in which these services are available, who provides formal and informal home support services, the determinants of service quality, and the links between quality service and quality of life.

In section four we present some preliminary findings related to home support in the North. Issues are described in relation to their context and recommendations are presented. In section five we present an overview of consumer perspectives on current critical issues in home support policy and service. These issues include: assessment and eligibility; regionalization and portability; user fees; appeal mechanism; staff training and administration; direct funding; unionization; and privatization.

In section five policy recommendations are presented after the discussion of each issue drawing on quotations from consumers of home support. We also explore attempts to address policy reform within the Canada Health Act versus a National Home Support Act.

In section six we discuss these policy recommendations in the context of the macro and micro political, policy and social environment and we outline the intersection between ideologies of exclusion and marginalization and the efforts of people with disabilities to influence policy making. We discuss the importance of a holistic approach to home support policy change that acknowledges the myriad ways that home support intersects with other policy areas, such as housing, education, health and citizenship. Finally, we outline areas for future research that can build on the issues presented within this report.

1.2 Who Requires and Receives Home Support?

1.2.1 People requiring support

Disability affects 12.4% of the Canadian population residing within households. Overall, 13.3% of women and 11.5% of men report a disability. It affects slightly more women (10.4%) than men (9.4%) between the ages of 15-64 years and more women (42%) versus men (38%) over 65 years of age. In terms of severity, in 2001, at least one in four persons with disabilities (26.9%) experienced severe activity limitations and 14.0% reported having a very severe disability. In total, approximately 1,283,080 women reported having moderate to severe disabilities whereas this level of impairment affected 971,780 men in Canada in 2001 (Human Resources Development Canada, 2002).

It is also worth noting that these statistics exclude the Yukon, Northwest Territories and Nunavut as well as First Nations reservations. The 2000-2001 Canadian Community Health Survey reported that the overall rates of disability were significantly higher among Aboriginal peoples than other Canadians (31% for those of working age and 53% for seniors). Of those with disabilities identified in 1991, the Aboriginal Peoples Survey reported that 45% had mobility impairments and 35% had disabilities associated with agility (see Human Resources Development Canada, 2002). Clearly there are many Canadians who live with impairment(s) who require assistance in everyday living.

1.2.2 People receiving support

The Participation and Activity Limitation Survey (1991) within the report, "Advancing the Inclusion of Persons with Disabilities," found that although 1.1 million women with disabilities needed assistance, only 44% had all the assistance they needed. Of the 700,000 men who needed assistance only 50% reported that they had all the support they needed (Human Resources Development Canada, 2002). Similarly, the document entitled "Disability Supportsâ€"Patterns in Usage and Need among Adult Canadians with Disabilities" prepared by the Roeher Institute (1995), reported that nearly two million adults with disabilities needed help with one or more everyday activities. Less than half of those (46.3%) who needed help received all the assistance they needed and 8% needed help and received none. This study also found that certain individuals were less likely to receive the help they need including:

• women with disabilities,

• people outside the labor force who consider themselves completely prevented from working

because of disability,

• people with low family incomes,

• people who are not receiving disability pensions/benefits,

• people with disability expenses that are not reimbursable by any plan,

• people living in rural communities,

• people with a severe level of disability, and

• older adults.

Major areas of unmet need for help with everyday activities include heavy household chores, regular housework and grocery shopping, although there is considerable need for help with meal preparation and personal finances as well. According to the Canadian Community Health Survey, 2000-2001, 24% of adults with disabilities stated that in the previous 12 months they did not receive all the health care they needed; in the 1994-1995 survey this statistic was only 10% (see Human Resources Development Canada, 2002, and Statistics Canada, 2001). Overall, there are many Canadians who require assistance, however, fewer people over the past decade are receiving the level of support they need.

1.3 Home Support: A Lifeline

Home support is currently managed under the umbrella of extended health care in Canada. Home support can be understood as a critical service in supporting a broader definition of health that includes physical, emotional, and psychosocial dimensions. The importance of social participation in health for people who live with impairments is reflected in recent international conceptualizations. For example, the World Health Organization's (2001) new framework, the International Classification of Functioning, Disability and Health (ICF), examines the body, in addition to individual activities, social participation and social environments, and recognizes the role of environmental factors in either facilitating functioning (body functions, activities and participation) or raising barriers (see also the Human Resource Development Canada (2002) report, "Advancing the Inclusion of People with Disabilities").

Home support can enable people with disabilities to move through various environmental, social, economic and political spaces to achieve their personal goals (Krogh, 2001, 2004). For example, a consumer from Newfoundland described how home support is central to her way of life:

[Home support is my] way of getting into the community. . . . It is the be all and end all â€"without it I can't do anything. It is a way of lifeâ€"from day one, I have always had people helping me with my care. It helps me as a personâ€"it is who I am, my studies, my job, it is the thing I need to make me equal to a person without a disability. (NL focus group participant)

Home support can assist people with apparent physical impairments, as well as people with less visible chronic illness or cognitive or emotional impairments (e.g., people with rheumatoid arthritis, head injury). Good quality home support fosters independent living, quality of life, and citizenship. This research project focuses on home support that adults with disabilities receive, and does not cover post-hospitalization home care or medical/therapeutic services. Neither does this study address the needs of those who experience primarily developmental, mental health or cognitive impairments.

1.4 Why Research Home Support Policy?

Home support policy and service issues affect everyone. The publication, Without Foundation: How Medicare is Undermined by Gaps and Privatization in Community and Continuing Care, outlined economic and social problems that result when home support services are systemically reduced (Canadian Centre for Policy Alternativesâ€"BC office, 2000). These include impacts on health care personnel, planners and administrators, social services, employers and businesses as well as informal caregivers and those who receive or who need home support. The following excerpt articulates how home support policy is a social justice issue:

The inequities are not hard to see. Some people are vulnerable because they can neither access public services nor afford private ones. Some are vulnerable to exploitation and even injury in their role as unpaid caregivers; others because they are paid workers in an underfunded, low-status field. Still others are vulnerable because they cannot find services that are culturally sensitiveâ€"a significant issue, given the intimate nature of health care. Exactly who is most at risk? Low-income women, people with disabilities and seniors living in poverty. Vulnerability is based on gender, income, age, ethnicity and disability. If this sounds like a social justice issue, it is. (pp. 14-15)

The social significance of home support policy cannot be overstated. Although home support delivery is a provincial responsibility, home support policy is of national significance. Home support is a critical precursor for citizenship for people with disabilities (British Columbia Coalition of People with Disabilities, 2000). Supports for citizens as they age and/or acquire disabilities will be critical as the "Baby Boomer" generation retires.

Internationally recognized scholars such as Mark Priestley (see Priestley, 1999) have articulated the importance of understanding personal support policy within the context of the lives of those who receive the service. Within Canada, disability groups, including the Home Support Action Group (HSAG) have stated, for example, that adequate home support across Canada is needed to ensure mobility rights are protected under section 6 of the Canadian Charter of Rights and Freedoms(Government of Canada, 1982) for people with disabilities.

The CCD has a long-term interest in disability supports, of which home support is one component, and the National Snapshot is part of this strategy. Similarly a theme of Dr. Krogh's research program at Ryerson University is the role of home support in the lives of people with disabilities. In particular Dr. Krogh examines how home support may enable people with disabilities to more fully engage in social, economic and educational spheres of society and how such activity can be understood as determinants of health. Inclusive and action oriented research that relies on text and non-text data (e.g., video) is another area of joint interest that was incorporated into this national study.

1.5 Terminology: Home Support, Consumer and Disability

1.5.1 Home Support

In this study we, the research team, define home support as personal, non-therapeutic assistance provided to people with disabilities outside of institutions. Home support services assist consumers in many aspects of their lives, including at home, in the workplace, and in the community to meet personal, employment, education, health, and social goals. Home support activities could include support with washing, dressing, meal preparation, homemaking, shopping, paperwork, attending community events, etc.

Some debate exists among consumers over the use of the terms, "home support" versus "home care." We choose to use "home support" as we wish to distance ourselves from the medical connotations that "home care" holds. The term, "personal assistance" also has merit as it suggests that the support is tied to the person, rather than the home.

This study does not address post-hospitalization home care, or medical/therapeutic services, e.g., nursing or physiotherapy. It does not deal with supports for community living for people with intellectual impairments as these supports for community living are typically delivered through a separate system from home support services. Since our resources were limited, we chose to focus our gaze on the services the provinces and territories defined as home care.

1.5.2 Consumer

to refer to a person with a disability who uses home support, or who feels he or she deserves or is in need of, home support services. In the context of this report we use the term "consumer" to refer to people with impairments who participated in this research project. We also refer to people who participated in this project as "users," or as "people with disabilities."

Part of the consumer health movement focuses on having medical professionals learn to see patients as customers who are paying for a service and are thus the ultimate authority of their own care and health. This concept of a consumer originates in the business model, and some people feel that it emphasizes a person's buying power over a person's inalienable rights as a citizen. The danger of this way of thinking is that home support administrators may legitimately apply a marketplace logic to the health care system and its "consumers." In health regions where home support administrators face shrinking budgets and pressure to limit who can receive home support services, administrators may slip into thinking of home support consumers as the dollar value they represent, or as a financial drain on the system. They may in fact be obliged to do so when following policy standards that have both quality and economy as goals (see Krogh & Johnson, in press, for a discussion of medical and economic reductionism in home support policy making).

The following quote illustrates the power of this economic reductionism in the reassessment process:

It is largely ineffective [reassessment] in that it is all dependent on money and not quality of life issues. . . . It is not about the person, it is about the money, and decisions seem to be made in advance. (PE interview participant)

Reducing home support users to a dollar value to fit the budget limits the potential of people's lives, and may direct home support administrators' attention toward the organization's needs (economy of service) and away from the consumer's needs (quality of service) (Campbell, Copeland, & Tate, 1999). This kind of thinking does not construct people with disabilities as citizens who have something of value to contribute to society, nor does it acknowledge the role of home support in enabling societal participation.

to signify an alliance with the movements of disability rights and Independent Living, which put forward the position that citizens should become empowered to make informed choices about all aspects of their lives. In this context consumers are conscientized (see Freire, 1985) people with disabilitiesâ€"people who have developed a consciousness, who believe that they are experts on disability services and supports and must be involved in the development and delivery of these services. As we outline in this report, we would like to see an analysis implemented by home support administrators in which home support is considered one of the building blocks for full citizenship for people with disabilities, and the contribution of consumers is viewed in broad termsâ€"social, cultural, political and economicâ€"when assessing eligibility for home support services. As one consumer stated,

One of the . . . things . . . that should be taken into consideration is what would be the benefit to the community if proper home care is provided? Will the person be able to work, will this person be able to do volunteer work . . . will this person be more socially active? What will be the long-term benefits of providing proper home care? (NS focus group participant)

The research team and the Council of Canadians with Disabilities believe in consumer control. At the political level, this includes people with disabilities controlling the decision-making structures in their own organizations and contributing to the various government policies and programs that affect their lives. At the community level, it means that there must be engagement with the self-representative organizations of people with disabilities when decisions about disability services are made. At a personal level, people with disabilities must have the opportunity to make their own choices about lifestyle, use of services, and the risks they assume.

1.5.3 Disability

A disability is a barrier that limits the carrying out of daily activities in some way which may ultimately affect an individual's participation in social, political, economic, cultural, and spiritual life. Although an impairment exists within the mind and/or body, we are interested in how aspects of the sociopolitical, economic, geographic, and policy environments create barriers for people who live with impairments. We employ the social model of disability, which deconstructs medical notions of disability that come from a preventative and curative perspective, or which rest on a view of impairment as a personal tragedy (Oliver, 1990). Such notions are ideological and cultural constructions, rather than reflections of reality (Abberley, 1997). We employ the analysis of the social model of disability, which defines disability and impairment with reference to the accommodations required by an individual to be able to participate in society (Council of Canadians with Disabilities, 2004). We wish to promote a goal of social integration that emphasizes the inherent citizenship rights of human beings, and which is not necessarily dependent upon the inclusion of people with impairments in "economically productive activity" (see Abberley, 1997), despite the high value placed on production inherent in the work ethic of our capitalist society. The experience of impairment is unique for each individual and within the study we rely on self-definition of impairment and disability.

2 Methodology

2.1 Identifying the Need for a Study from the Community

The Council of Canadians with Disabilities (CCD) is a national consumer-controlled advocacy organization of people with disabilities. The CCD's mandate is to monitor federal legislation, policy, and programs as they impact people with disabilities, and to take action to ensure the citizenship rights of people with disabilities are upheld. The CCD's membership includes both provincial cross-disability consumer advocacy associations and national uni-disability consumer advocacy organizations. The CCD seeks to improve the status of Canadians with disabilities and fights against ableism, the root of many common misconceptions about disability, e.g., disability means suffering. "Our purpose is to speak for and represent ourselves. We are a grassroots self-help movement seeking equality and self-determination over our own lives" (Council of Canadians with Disabilities, 2002). The CCD has worked for over 25 years to ensure that the voice of people with disabilities is heard in national policy discussions.

2.1.1 CCD guiding principles

Four principles guide the CCD's activities:

1. Citizenship: People with disabilities hold the same rights and responsibilities as other Canadians. Barriers to our participation discriminate against us and must be removed.

2. Self-determination: As full citizens we assert our right to direct our own lives and make our own decisions.

3. Consumer control: We must be centrally involved in the decision-making processes that affect our lives.

4. Equality: The Canadian Charter of Rights and Freedoms guarantees equal benefit and protection of the law and prohibits discrimination based on physical or mental disability. All other legislation must be brought into line with the Charter. (Council of Canadians with Disabilities, 2004)

The CCD organizes around six committees: Access to Information, Health Reform, Human Rights, International, Social Policy, and Transportation. The Health Reform Committee has articulated the need for research into home support policy that reflects consumers' expertise and perspectives with the expectation that it will help with their lobbying efforts. The present study fills a need stated by the community and it explores critical issues that the national disability community has highlighted to be very problematic in home support policy. Prior to embarking on this study the CCD surveyed member organizations and found that the majority identified disability supports, of which home support is a critical component, as a top priority issue. This project originates from and emphasizes the perspectives of people with disabilities. It emphasizes the importance of including consumer voices in home support policy and service analysis, and in the formation of recommendations.

2.2 The Beyond Four Walls Pilot Study

This investigation is built on work involving the Home Support Action Group (HSAG), a coalition of disability and caregiver organizations in Victoria, BC. The HSAG collaborated with Dr. Kari Krogh when she was a Social Sciences and Humanities Research Council Post Doctoral Fellow and Adjunct Professor in the Department of Human and Social Development at the University of Victoria. One of the research products that resulted from this collaboration was a documentary and research video entitled, Beyond Four Walls: The Impact of Home Support on Health, Work and Citizenship for People with Disabilities. The methodology developed (Krogh, 2001, 2004) and findings of this research informed the current study, A National Snapshot of Home Support from the Consumer Perspective, referred to herein as the National Snapshot.

During the study period of the Beyond Four Walls project, health and home support was more narrowly defined in the Capital Health Region (CHR) of British Columbia. The CHR, in a deficit position, sought to decrease costs by reducing eligibility for the publicly funded home support system, decreasing the types of services that were offered, e.g., eliminating homemaking and meal preparation, and reducing the level of service hours for many. Cutting home support, or limiting services offered through the publicly funded system, may create cost savings in the short term. In the medium term, acute care expenses can rise when the risk of personal injury rises, e.g., when people with bone disorders must do heavy cleaning like vacuuming. The long-term costs, deferred to future governments, taxpayers, and home support users, are painfully high: more frequent hospitalization, lower level of personal health, loss to communities of contributions from people with disabilities, and limits set on human potential (Hollander, 2001). As Maria, a participant in this initial study, explained, "At this moment I don't have any plans for the future because I don't know what the future will bring. If I can't get out of bed, it's no use planning anything" (Maria, in Krogh, 2001).

The Home Support Action Group's interactions with policy makers revealed a conflict between how the policy makers saw HSAG members, and how HSAG members (consumers and allies) saw themselves. Viewing consumers as passive recipients of service, or dependent on charity, or through a medical lens that focuses on people's limitations, contradicts the efforts of people with disabilities to recast the image of people with disabilities as capable participants, contributors, and citizens of society. Stereotypical views of people with disabilities illustrate a lack of understanding among policy makers of how people with disabilities define and experience home support services, and how people with disabilities see themselves (Krogh, 2001; Krogh & Johnson, in press).

This initial study highlighted a need for policy makers to understand the social determinants of health and disabilityâ€"how misguided policies, under-funded services and inaccessible spaces turn functional limitations into disabilities. Home Support Action Group members wanted to see policy makers educated in the principles of Independent Living, and recognize the role of consumers in creating and evaluating policy that directly affects their lives.

Beyond Four Wallsconfirmed that in this region of British Columbia, home support fosters the development of human potential. Adequate levels of home support and appropriate services have direct health benefits for people with disabilities, whereas inadequate home support undermines citizenship rights of home support consumers. A central recommendation of this study is as follows:

It is essential that the lived realities of people with disabilities, the goals of the disability movement, and the social theoretical model of disability explored through the academic discipline of Disability Studies are understood by government policy makers. We need to recognize that home support policy has a wide range of impacts on the lives of all Canadians. (Krogh, 2001, p. 27)

The goal of the National Snapshot was to build on the research findings of the Beyond Four Wallsproject. The National Snapshot expands our understanding of home support policy and service with particular emphasis on the perspectives of people with disabilities from across Canada in analyzing issues and formulating recommendations that promote positive change in their lives. Beyond Four Wallsprovided an opportunity to assess the use of video to capture and communicate perspectives of people with disabilities and facilitate analysis of policy issues. This contributed to the pilot study's exploration of how to study home support in a participatory manner, a methodological question that we continue to address in the design, research, and dissemination of findings of the National Snapshotproject.

2.3 Philosophical Roots of Inquiry: Using Participatory Methods

2.3.1 Social model of disability

The National Snapshotstudy is grounded in the discipline of disability studies (see Linton, 1998) and the social model of disability. A disability studies perspective adds a critical dimension to thinking about the extent to which exclusion, aesthetic ideals, and social policies and practices have significant consequences for people with disabilities (Ryerson University School of Disability Studies, 2002). Disability scholars refer to this as the "social model of disability" and contrast it with the more traditional emphasis on biological impairment, termed the "medical model." The social model of disability considers a wide range of social and material factors that make up an individual's experience of disability. The social model "spans the individual's experience of disability, in the context of their overall biography, social relationships and life history, the wider circumstances of disabling barriers and attitudes in society, and the impact of the state policies and welfare support systems" (Barnes, Mercer, & Shakespeare, 1999, p. 31). Within the National Snapshot, we attempted to apply the social model lens to our analysis of home support policy, looking at the effects policy can have on either reducing barriers or creating them in pursuit of the goal of full inclusion of people with disabilities in society.

2.3.2 Participatory Action Research

This research project employed a Participatory Action Research (PAR) methodology. The Council of Canadians with Disabilities (CCD) and Co-Principal Investigator, Kari Krogh, partnered and collaborated on all stages of the research project. Research participants were involved in identifying the research area, designing data collection methods, engaging in analysis and using research results within the context of education and action (see Hall, 1984).

The principles behind Participatory Action Research (PAR) are derived from Freire's (1985) ideas of praxis, conscientization, and situating research in the lived experience of participants and Habermas' critical theory (1971). PAR is employed as one means of addressing the gap between researchers and the intended beneficiaries of research (Turnbull, Friesen, & Ramirez, 1998), or as a way to break down what Foucault calls "the gaze"â€"the dispassionate, clinical position of seeming objectivity on the researcher's part (Foucault, as cited in Singer, 1997). Participatory Action Research (PAR) is an approach to applied social research that seeks to define relevant issues, solve problems, and ensure research-based solutions are meaningful, useful, and actually make a difference in the lives of subjects/stakeholders (Santelli, Singer, DiVenere, Ginsberg, & Powers, 1998). PAR represents one way to attempt to address the power differential that can otherwise be reinforced throughout a research study, e.g., involving participant representatives in identifying the research area(s) and in framing the research questions (see Oliver, 1992 for a discussion on this). In this way, our intent was to conduct research conducted "with," rather than "on," the subject (Stevens & Folchman, 1998).

Kari Krogh's previous research investigated issues of power sharing within partnerships that included people with disabilities (Krogh, 1996, 1998; Krogh & Lindsay, 1999). The impetus for the National Snapshot project was CCD's interest in disability-related supports and the improvement of home support for persons with disabilities. Subsequently, Kari Krogh and the CCD worked together over two years to strategize ways to expand upon the Beyond Four Wallsproject to extend and refine the knowledge base on home support issues across Canada. This collaborative project attempts to meet academic, community and policy needs.

Each partner assumed different but complementary roles in the partnership. Kari Krogh, with research assistants, was responsible for obtaining and administering funds, preparing materials for a Ryerson University ethics review, managing collection of informed consent forms from all participants, drafting tools for gathering data, establishing an online system to support project communications, managing and coding data, and writing the research report and academic publications. The Council of Canadians with Disabilities with its national coordinator was responsible for obtaining and administering funds, coordinating project communications including meetings and teleconferences, coordinating consumer input at all stages, and ensuring community use of the study results. The CCD played an important role in using existing networks to establish the 13 research sites and in monitoring ongoing data collection. In terms of project outcomes, Kari Krogh was responsible for overseeing the completion of the final research report and related academic publications. The CCD was responsible for the production of a concise home support policy recommendation report and a report with recommendations for increasing consumer participation in policy making.

The partners employed a collaborative, democratic decision-making model in which the research team discussed topics or issues until they reached consensus. Day-to-day decisions were made by the research team. Much of the decision making occurred during teleconferences, although the team met in person, in Winnipeg, several times over the duration of the project. A critical meeting occurred in Winnipeg in March, 2003. At this time the majority of CCD member organization delegates who would become provincial and territorial coordinators for the National Snapshot came together to review and provide refinements to the proposed data collection methods and tools. Issues of ethics and quality in data collection were discussed, the goals of the study were finalized, and the theoretical and methodological perspectives of the research team were synchronized. By bringing the research process to a local level across the country, the research team hoped to build capacity in CCD's member organizations, which would facilitate their local and collective use of the study results.

2.3.3 Emancipatory Research

The purpose of this project was to review home support policies and practices across Canada from a consumer perspective. Increasing the participation of people with disabilities in home support policy analysis and change were organizing principles considered in designing this research project.

Principles of Emancipatory Research (ER) influenced the design of this research project. According to the Frankfurt School of Critical Theory, ER is defined as collaborative, critical, and self-critical inquiry by practitioners who own the problem and feel accountable for solving it through team work (McLarty & Gibson, 2000). Empowerment can occur at two levels. At the first level, informants are liberated by a research design to voice their own views and values and to act in ways they judge to be productive. At the second level, informants are empowered by being initiated in, and by collaborating in, the research design itself and the values embodied in it (Heron, as cited in McLarty & Gibson, 2000). This research project aimed for both of these levels of empowerment.

Oliver called for an ER approach in which research not only intersects with the interests of people with disabilities, but is also controlled by people with disabilities. Central to ER is both the recognition and confrontation of power that structures the social relations of research production, but also the demystification of the ideological structures within which these power relations are located (Oliver, 1992). Emancipatory Research must be based on three fundamental principles: reciprocity, gain, and empowerment (Gollop, as cited in Oliver, 1992; see also Mertens, 1998). The issue for the ER paradigm is not how to empower people but, once people have decided to empower themselves, ER is about discovering what research can do to facilitate this process.

This research project is a collaboration involving individuals who are familiar with the experience of impairment and disability who occupy primarily academic and primarily community locations, i.e., Ryerson University's School of Disability Studies and the Council of Canadians with Disabilities. Both partners, Kari Krogh and the CCD, were responsible for administering funds for this project. The CCD received project funding for this research through the Social Development Partnerships Program Disability Component, Human Resources Development Canada. A Social Sciences and Humanities Research Council of Canada (SSHRC) grant to Kari Krogh also supported this research project, as did a Senior Research Fellowship from Canadian Institutes of Health Research (CIHR).

2.4 Data Collection Methods

In this project we addressed the following questions:

1. Policy review: What are the home support policies in each province and territory?

2. Policy impacts: What do home support policies mean in the everyday lives of people with disabilities?

3. Policy analysis: What does it mean to live as a home support consumer in certain geographic regions, cultures, socioeconomic groups, and provinces/territories in Canada? How is citizenship affected by home support policy? What policy recommendations can be made to improve circumstances for people with disabilities in Canada?

4. Policy participation: How can people with disabilities be involved in home support policy? How can participants with disabilities be involved in identifying issues, analyzing issues and promoting policy recommendations resulting from this project?

The research team decided to employ a number of data collection tools in order to gather a variety of forms of complementary information from consumers about the impact of home support and related policy on their lives. Tools developed by the research team were used to guide the collection of consistent information from each of the 13 research sites across Canada. These forms of data included:

· Home support policies template (a 15-page online form to complete on home support policy drawn from government sources including personnel and documents and a brief template summary prepared by the regional coordinator) (Appendix A);

· Individual interview/online survey questions (Appendix C);

· Suggested format for focus groups: Guidelines for provincial/territorial coordinators (Appendix D); and

· Videotape guidelines (Appendix E).

In addition, to support professional and ethical collection of data, the research team provided research coordinators at each site with:

· Criteria for identifying individual interview/online survey participants, focus group participants, and individuals to be videotaped (Appendix B); and

· Informed consent agreement: Interviews/online surveys, focus groups, and videotape demonstrations (Appendix F).

All interview, focus group, and video data collection efforts had clear written guidelines that were reviewed in person at the meeting in March, 2003. Provincial/territorial coordinators using the tools also received ongoing telephone support from Kari Krogh, Maureen Colgan and other members of the research team as needed.

The informed consent was drafted by Kari Krogh, reviewed by the research team, and approved by the Ethics Review Board at Ryerson University. The Home Support Policies Template was developed by Kari Krogh, modified by the research team and regional research coordinators, and refined in a subcontracted review conducted by the Social Program and Evaluation Group (SPEG) at Queen's University. "Hot topics" in home support policy were determined at the March, 2003 meeting, attended by the research team and representatives from each participating CCD member organization coordinating research activities within their region. Those who participated in the meeting proposed critical topics drawing on issues raised by consumers in their region. These issues were explored through focus group discussions and videotaped demonstrations.

Policy information was collected by the regional coordinator at each site, who used the Home Support Policies Template (Appendix A) as a guide. Provincial and territorial coordinators obtained copies of provincial or territorial policy documents, which they used to complete the template, before forwarding data to the research team in Winnipeg and Toronto. Each regional coordinator consulted with up to three policy makers in completing the template. Provincial/territorial coordinators also completed a template summary. All policy documents were forwarded to the Senior Research Assistant who confirmed and/or elaborated upon the provincial and territorial policy information included in the template. The purpose of the template was to identify regional variations in home support policy in each province or territory through the collection of standard information related to eligibility, assessment procedures, levels of service and levels of consumer control.

Data was also collected in the form of interviews. Provincial and territorial coordinators were responsible for selecting eight individuals who had experience with the home support system, either as first hand users or as someone in need but unable to access services (see Appendix C). The majority of participants completed interviews online, except in some cases where alternative accessible formats were used (e.g., physical assistance with typing to accommodate for barriers associated with literacy or a lack of availability of computer technology). The purpose of the interviews was to obtain concrete examples that illustrate how home support policies and services affect the everyday life of people with disabilities. These stories were meant to illustrate the links between certain types of policies, e.g., eligibility restrictions, and other aspects of life, including health, work, education and citizenship. As well, factors such as geographical location, gender, ethnicity, and economic status were explored in relation to home support. The research team explicitly instructed regional coordinators to ensure diversity among the participants selected for this study. For this reason, supplementary interviews with First Nations and Métis individuals who lived in the southern part of Canada were conducted.

One focus group was held in each participating province or territory except British Columbia, New Brunswick, and Nunavut. Provincial and territorial coordinators mediated the focus groups, often with the administrative support of the local CCD affiliate organization. They were responsible for identifying participants for the groups in accordance with selection criteria outlined in written guidelines for data collection (see Appendix B). In addition to answering a set of questions related to their hot topic, focus group meetings included a summary report of policy information collected for their province or territory through the template. Beyond Four Walls was also shown, as previous research (Krogh, 2002) demonstrated that it facilitated experienced-based discussions of home support among consumers. Participants were encouraged to use it as a starting point for discussing similarities and differences with respect to the home support issues in their area. Participants then explored a hot topic assigned to that region. These topics were divided among regions as follows: regionalization/portability (Alberta), direct funding (Saskatchewan), appeal mechanism (Manitoba), rural/urban issues (Ontario), privatization (Québec), eligibility and assessment (Nova Scotia and Prince Edward Island), unionization (Newfoundland and Labrador), remote/territorial issues (Northwest Territories), and in the Yukon, issues unique to the Yukon Territory.

Recommendations for how to increase consumer participation in policy making were derived from discussions of this issue that took place in each focus group. The member organization in British Columbia chose not to hold a focus group or interviews as they had been heavily involved in the Beyond Four Walls project and wanted to focus their efforts on other areas related to home support policy and policy participation. New Brunswick and Nunavut did not have a member organization from which to draw participants. For these regions individuals were subcontracted.

Videotape clips that illustrated the role of home support in the lives of individuals with disabilities and that related to the selected hot topics were also collected. In most cases only one individual was videotaped by the regional coordinator, or one individual with their support worker. Québec video participants conducted a discussion. The aim of using this medium was to articulate narratives or demonstrations that would not emerge through more directed, empirical means like focus groups or structured interviews (see Appendix E). Video clips illustrate an aspect of the lives of people with disabilities that would otherwise remain hidden from view. For example, one participant included shots of the physical inaccessibility of her kitchen and showed us how she as a wheelchair user therefore required home support for meal preparation. Participants were told that the video could include the voices, images, ideas or movements of people with disabilities within meaningful spacesâ€"at work, home, or school.

Finally, mediated online discussion groups had been planned as a means of stimulating consumer analysis of the data generated in this study. Given the tremendous amount of data already generated in this project and the technological reservations of some members of the research team, the research team chose to forego this component of the project. Matters were complicated by concerns about full accessibility and inclusiveness of participants with impairments affecting literacy, use of technology, translation between French/English/American Sign Language, etc. Instead members of the data analysis team individually reviewed draft reports on specific "hot topic" areas related to their interests and expertise.

As part of our data analysis procedures we coded transcripts of interviews, focus groups, and video clips, looking for themes across the data types. Coding systems were developed by Kari Krogh during the ongoing process of data collection, review and analysis. The codes were refined and elaborated upon through collaboration/joint coding between Kari Krogh, and research assistants Cathy La France, and Victoria Bowman. Codes were also reviewed and modified by the research team at various stages. During analysis we sought triangulation by looking for common themes in the interviews, focus groups and video transcripts. We also identified themes unique to a particular region, culture, or individual. We compared the experiential data with stated policy documentation to identify consistencies and contradictions as measured by their effects on consumers' lives. We developed draft reports which described issues and recommendations that were derived from the data. Members of the data analysis team reviewed these draft reports and provided feedback on the issues explored and recommendations put forward.

Our research team made considerable effort to ensure that the voices of users of home support would be reflected in this study. The CCD network across Canada assisted the team in attaining this goal. However, the research team was aware of the potential inappropriateness of having southern researchers study the North, especially Nunavut. We hired regional coordinators as in other areas of Canada. The regional coordinators for Nunavut had had experience working and living in the North. They made two trips to the interview site of Iqaluit to build links and follow up on potential future projects that would be based out of the North. One of our principal investigators, Kari Krogh, also traveled to Iqaluit, Nunavut, to participate in some of the interviews and informal discussions with community members, service providers and government personnel.

We decided to include northern data in a separate section within this report, grouping together Nunavut, the Northwest Territories, and the Yukon, while recognizing that significant differences exist between these three regions. The Northwest Territories followed the same research model as the rest of the country. In the Yukon, consumers held a focus group and the territorial coordinator completed the policy template. We suspected that our investigation of the North would be preliminary and exploratory only and this was particularly the case in studying home support issues in Nunavut. Research in Nunavut was unique with respect to culture, language, historical and current oppressions, higher costs of service, native self-government structure, etc.

The Council of Canadians with Disabilities plans to circulate a project evaluation (see Appendix G) to each member organization alongside products of this research to elicit feedback on both the process of the research and on the validity and usefulness of results.

2.5 Challenges and Limitations

As is typical in participatory and action oriented research, we faced challenges related to the time required to undertake this study and the costs involved (see Turnbull, Friesen, & Ramirez, 1998). These factors were exaggerated by the vast geographic area involved, the large number of resource people involved, as well as the diversity represented in terms of culture and language among our approximately 150 research participants actively involved in interviews, focus groups and videotaped demonstrations/discussions.

The findings of Santelli et al. (1998) corroborated these challenges; because PAR is democratic, it takes more time to complete than traditional forms of research. Within the National Snapshot project our participatory processes involve consensus decision making among research team members representing academic and community interests within the partnership. In addition, we required effective communication among 13 regional research coordinators, and the integration of systematic input from 15 people who acted as data analyzers, policy advisors or research assistants at specific points in time.

Given our commitment to inclusive research practice as reflected in the study design, we were required to incur costs associated with, for example, the:

• preparation of all research tools for collecting data in electronic and/or alternative formats to accommodate a range of disabilities among those involved;

• use of Inuktituk interpreters for interviews with home support users in Iqaluit, Nunavut;

• travel and accommodation associated with the co-principal investigator's trip to Nunavut;

• translation of all data collection tools into French to represent Canada's two official languages, as well as the translation of French data, including portions of policy documents (not available from the Québec government in English), videotape clips, and focus group discussions into English; and

• travel and accommodation associated with bringing the regional coordinators together to review and refine plans for the study.

Notwithstanding the tremendous number of tasks that had to be coordinated and the significant costs involved, we were able to manage to complete the majority of tasks as planned with a couple of exceptions.

We had originally hoped to stream online segments of the collected videotaped material for an interactive report. The technical quality of the videotapes, however, was limited due to a lack of resources to hire professional videographers. Interestingly, these same factors led us to collect what we now believe is a valuable and original form of data that was considerably more open-ended than the data collected through the structured interviews. Participants were provided with guidelines (see Appendix E) and encouraged to creatively express their ideas.

There were slight variations in the types of data gathered from sites as a result of limited human and economic resources. In some instances such as the BC site, the regional variation was in direct response to the expressed interests of consumers and disability groups to focus on a related but unique area of interest (participation in policy making). The research team particularly wanted to accommodate their request, given that they had already been involved in the Beyond Four Walls project that involved interviews and video.

In addition to the above challenges, both principal investigators required unanticipated leaves of absences related to disability/health during the two-year study period. Also, our original research coordinator left the project prior to its completion. The research project was able to respond to and accommodate these particular challenges primarily by increasing the level of involvement of two individuals. Victoria Bowman, who had mentored under Kari Krogh for three years and worked on the Beyond Four Walls project as its lead research assistant, took on the research coordinator position for the National Snapshot. She also increased her responsibilities related to the demanding task of coordinating the preparation of several final reports drawing upon a range of draft data reports, a previously conducted literature review, and some preexisting analytic pieces prepared by Krogh, Johnson and Bowman. She also conscientiously worked to incorporate feedback from many individuals on various drafts of final reports. Jon Johnson, who had completed an independent reading course taught by Dr. Krogh as part of his Ph.D. program that examined theoretical analysis of home support policy for people with disabilities, joined the team to assist with preparation of the final research report. In part, he was able to draw on several recently completed writing projects involving Krogh, Johnson and Bowman.

3 Impact of Home Support on People with Disabilities

3.1 Quality of Service, Quality of Life and Citizenship

The value we place on quality of life and the efforts we make to protect full citizenship opportunities for all members of Canadian society are reflected in our social policy. In the paper, In Unison 2000: Persons with Disabilities in Canada, citizenship is defined as central to an understanding of disability issues:

Citizenship is the inclusion of persons with disabilities in all aspects of Canadian society â€"the ability of a person to be actively involved with their community. Full citizenship depends on equality, inclusion, rights and responsibilities, and empowerment and participation. (Human Resources Development Canada, 2000)

As Canadians we believe that a comprehensive health care systemâ€"high quality, affordable, and accessibleâ€"is both a right and a responsibility of citizenship (Home Support Action Group & Krogh, 2002). If policy makers envision a society in which people with disabilities are active contributors and full citizens, the key to enabling this participation is the provision of quality home support services together with other access accommodations, such as accessible housing and transit.

Home support can enable consumers to define and realize their own idea of a quality life. In fact, having the opportunity to make choices and develop one's own ideas about quality of life is critical for people with disabilities. This point is evident in the following comment made by a participant from Québec:

The problem is that ergotherapists, physiotherapists and other doctors who are not disabled evaluate the concept of quality of life for us. They are not in my place, and cannot understand the extent to which I feel, every day, that I am running a marathon, without end. Because each step that I take represents ten that you take. So at the end of the day, I am not simply tired, I am exhausted! But that's a given if you do not have the right equipment, the right apartment, or support. Or if people around you fear you because they do not want to become your assistant and exhaust themselves looking after you. (QC focus group participant)

The Quality of Life Profile for Adults outlined nine areas of life in three domains to ultimately answer the question, "How good is your life for you?" The three domains include: 1) beingâ€"referring to physical (body and health), psychological (thoughts and feelings), and spiritual (beliefs and values) being; 2) belongingâ€"which involves physical, social and community belonging; and 3) becomingâ€"which considers practical, leisure, and personal growth (Quality of Life Research Unit, 2002). The comments made by participants in the National Snapshot project clearly communicate the essential role of home support in contributing to their quality of life. Home support can result in greater opportunities for people with disabilities to engage in social, economic, and political spheres of society as well as provide opportunities for well-being, personal development, and even enable commitment to experiences such as parenting and having intimate relationships.

What follows is an overview of the types of services available through home support, who provides the services and their location. This is followed by an exploration of the impacts of home support service on quality of life for people with disabilities.

3.2 Types of Home Support Services

Home support services encompass a wide variety of tasks, including but not limited to any of the following:

• bathing, bowel care, personal hygiene;
• assistance getting up in the morning, dressing, feeding, communicating, and going to bed;
• housekeeping, cooking, and laundry;
• informal health monitoring;
• respite for informal caregivers; and
• providing support (informal emotional or psychological support).

Many consumers across Canada receive assistance with personal care. One consumer described in detail the types of home support he requires:

Bowel care, catheter care, skin care to prevent sores, repositioning, transfers with a mechanical lift, bathing, dressing, meal preparation and sometimes help with feeding, immediate intervention to prevent a stroke resulting from dysreflexia, physical assistance with shopping, writing correspondence, assisted coughing to prevent build-up on my lungs that could lead to pneumonia or chest infection . . . in short everything under the sun that one normally takes for grantedâ€"except talkingâ€"don't need much help there! (NL interview participant)

But for many, home support extends beyond the realm of the physical body or biomedical procedures to community participation as illustrated by the following quotation:

I receive assistance with meal preparation and feeding, bathing, housework, i.e., laundry, dusting, etc. . . . Grocery shopping, banking, and any other duties related to my daily life activities, i.e., accompanying me on outings, and meetings. (NL interview participant)

The types of home support services available vary across Canada depending on policy and funding levels. In many areas of the country consumers are now only eligible to receive assistance with meal preparation or homemaking if they also require personal care. In other areas meal preparation and household tasks, such as cleaning and laundry, are no longer publicly funded.

3.3 Who Provides Home Support Services?

3.3.1 Formal support

Provincial policy dictates home support policy and procedures, but delivery of home support services is organized differently across the country. Service delivery options include provincial government departments, regional health authorities, the private sector, the voluntary sector, nonprofit organizations, and municipal governments. In some provinces and territories home support is delivered through the public sector exclusively, such as the Northwest Territories, Nunavut, and the Yukon. Other provinces use a mix of public, private and nonprofit, as in the case of British Columbia and Ontario. And some provinces like New Brunswick deliver home support services completely through the private sector (Canadian Home Care Association, 2003). The way home support services are provided affects the quality of service home support users receive, and many participants in this study indicated a preference for public, nonprofit home support administration and delivery.

Informal support

Informal home support refers to home support tasks provided informally, without payment, to consumers by friends, family, neighbors, or volunteers. The majority of unpaid caregivers are women (Morris, 2004). In British Columbia 80 to 90 percent of home support is provided by unpaid caregivers (Canadian Home Care Association, 2003). In rural areas, higher numbers of seniors and people with disabilities, coupled with limited services in rural areas, place great demands on family caregivers (Morris, 2004). Similarly shorter hospital stays, the shift to home and community care, and funding cuts to home support programs across the country have all placed greater demands on informal caregivers. Generally provincial and territorial policy states that home support services are meant to supplement, not replace, the informal support networks. Many consumers participating in this research project contest this policy of forced dependence on informal caregivers for home support, and mandatory reliance on unpaid providers for back up/emergency home support.

3.4 Location of Home Support Services

The location in which people receive home support services depends on several factors. In part it depends on the needs of the individual, as illustrated by the following comment:

The only place I require support is in my home unless I am away from home on a trip or whatever, but the requirements remain the same. (AB interview participant)

It also depends on the policies of particular provinces or territories governing special programs like direct funding. In some cases this means individuals can receive care wherever they require it, as in the following examples:

Up until just about a month ago, I wasn't allowed to take my homemaker out of the home. I am now, but [I don't know] if that's because I complained so much or [if] everybody's doing that now. (First Nations interview participant)

I receive supports at home, my place of employment, in the general community, as well as when I have traveled away from home. (MB interview participant)

The location of home support services varies both between provinces and territories, and also within different health regions of one province or territory, as this comment illustrates:

According to the RHAs [regional health authorities] surveyed, home care is primarily provided in the home and possibly in community settings. In the urban area, home care was not specifically approved in any area outside the home. In the rural area, home care could be approved on a preauthorized case-by-case basis for personal assistance to medical or exercise appointments. As shown by these responses, the location of home care services varies depending on the RHA. (AB policy template summary; Response from Northern Lights Health Region, 2003; Response from the Office of the Director of Operations, Capital Health Home Care, 2003)

For many, home support services are restricted to the home environment.

Home support in British Columbia is increasingly confined to the home. (BC template summary; Government of British Columbia, 2000)

Mainly in my home, but if at anywhere else, either my husband or a friend who we have trained to help me will take care of these duties. (MB interview participant)

In provinces or territories where direct funding is an option, consumers on the direct funding program may receive their home support services in a wider variety of locations than consumers on the regular agency-based system.

For individuals on self-managed care, a person could have support in any of the following areas: home, workplace, education, and community settings. The amount of support they receive in various locations would depend on the number of dollars they receive to hire support. (AB policy template summary; Response from the Office of the Director of Operations, Capital Health Home Care, 2003)

Individuals who use direct funding through the Choices in Supports for Independent Living (CSIL) program have more flexibility and their personal attendants may accompany them to a range of activities outside of the home. (BC policy template summary)

Many consumers feel their home support should be tied to the individual, rather than to a specific location. The fact that direct funding programs allow this kind of flexibility and user control makes these programs favored among many home support users.

3.5 Home Support Enables the Attainment of Life Goals

3.5.1 Setting goals in everyday living

Dependable home support service enables some consumers to set goals and pursue them:

[Home support] enables me to participate in whatever I choose, whenever I can. That includes writing, attending meetings, volunteering, taking classes or seminars, and most importantlyâ€"staying out of a group home or other institution. (NL interview participant)

My goals have changed, but for the better I think. I have been understood and even encouraged. (QC interview participant)

A member of the data analysis team described the role home support plays in his life. He called home support the "critical lynch-pin" that holds everything together:

My weekday worker of ten years arrives at 6:30 a.m. . . . Familiarity and years of repetition mean that delicate personal care will be performed quickly and to a standard that I do not have to worry about mistakes that could ruin my day. As I am having parts of my body prodded and poked, bandages placed, where and when necessary, I can read the paper and begin by 8 a.m. making calls relative to my workday ahead. The routine may sound boring to many as I eat the same nutritious breakfast and have a lunch packed. However, not having to go over such mundane matters each day allows me to converse with my worker on a personal level and initiate a wider variety of activities as the day begins. At 9:30 a.m. I am off to work; leaving my home with the bathroom cleaned, clothes washed and myself, clean, comfortable and prepared to devote my attention to my "life" outside my home. Whatever I do that day, that night, with assistance from my night worker, the next day and hence, is totally related to the dependable, flexible and quality home support I receive. The innumerable number of tasks they perform, from intrusive personal care to meal preparation and maintaining a hygienic home, are the critical lynch-pin that holds my active days together. (Data analysis team member, personal communication, September 22, 2004)

Home support can be both critical and invisible in enabling opportunities in everyday life. The above comment also highlights the fact that support takes place within the context of an interdependent human relationship.

3.5.2 Work

Home support, when provided at no additional cost to the consumer, enables people to contribute to the work force, or obtain the necessary training required for employment. Conversely, inadequate home support actually prevents people from pursuing their goals:

I have cerebral palsy. I have been receiving home care for ten years and have been struggling to keep it the entire time. I received a Bachelor of Commerce from St. Mary's University and three levels of web design certificate from the Nova Scotia Community College. I then wanted to fulfill my dream of being an accountant but unfortunately due to government limitations, I was unable to attain my goal. If I was working, I would not be able to have the home care support that is essential for me to live in the community. (NS video participant)

The issue of employment making people ineligible for home support services, or an inflexible home support service schedule making it impossible for people to work, was raised several times by participants in this research project. Good quality home support should enable people to pursue their dreams, not prevent them from doing so.

A participant from Saskatchewan described how working can support independent living:

Mainly [home support] allows me to go to work which means I can support myself and live by myself in my own apartment. It also allows me to participate in all the other daily activities that I choose to do. (SK interview participant)

3.5.3 Family life

Quality home support gives consumers access to family life opportunities such as parenting, partnering, friendship, and companionship. These are frequently taken for granted by people who do not have disabilities.

[Home support] enables me to parent my children. (NL focus group participant)

Many consumers stated that home support meant their relationships with their partners could focus on supporting and loving each other, rather than on meeting unmet care needs.

Home care is the only home support system available and plays a major role in enabling me to remain clean and cared for without putting stress on my husband to care for me. It enables me to stay out of an institution and enables me to present myself to the community in a dignified manner. It is the most important service that the government can provide next to health care. (NS interview participant)

In some cases consumers stated that they felt relieved to be able to arrange care for themselves, which meant for easier, more equal relations with family members:

I appreciate that I have a place to stay. I was staying with her family for a while and I felt that I was intruding in the family, I was an added expense for themâ€"in the way. So I very much appreciate the care that I'm getting here. (NU interview participant)

3.5.4 Social life

When consumers can socialize in a clean home or can access the community with necessary supports in place, they are free to enrich themselves, their relationships, and their communities:

At the end of the day, I can do whatever it is I want to do to enjoy life. For example, I love to walk around the city and go to a movie, maybe even listen to a live band play or dance. I especially love to dance to my favorite band, the hop. Also, I am able to enjoy the company of my little nephew, and finally I am able to enjoy a beer now and then. All of these things I would not be able to enjoy if I did not have home care. (NS video participant)

Home support enables people to enjoy life.

3.5.5 Health

Many consumers stated that quality home support meant they were able to take care of those things that make a person feel "like an actual person":

When I had more help, it freed more energy, so I was closer to being employable. I was able to exercise, for my health. Closer to being at what would be an optimal health for me to live an independent life. Functional, like an actual person. (ON interview participant)

Home support is directly related to creating targeted opportunities to use abilities. Home support also protects the emotional health of consumers. Many consumers described living in fear of losing their home support service:

Emotionally when I don't have proper care, I feel very vulnerable and frightened and at risk. (AB interview participant)

Ensuring physical safety is an important function of quality home support:

The support protects me from getting hurt, and helps me maintain the energy level that is so precious to me. (PE interview participant)

Finally, home support is a preventive health service. Quality home support keeps people within the range of their own optimal health. Without it, people are at risk of injury, illness, hospitalization, and even death:

[Participant 1]: If people have more services, they will be less sick, and if they are less sick, they will go less often to the hospital.

[Participant 2]: And they will be more involved socially. (QC focus group participants)

3.5.6 Citizenship

Home support is the bridge for many consumers from home to community:

They help me within the community so that I can participate in regular swimming activity and they also assist me in my need to have personal assistance when attending meetings outside the home. They help me keep appointments. (ON interview participant)

Quality home support is about having a clean, healthy body, having the ability to live a meaningful life, and having the same opportunities available to all Canadian citizens:

[Home support is] one of the most important parts in one's life, because you need to get out of your bed to start your day. . . . [Home support is] one's opportunity to live a meaningful life. Home support provides a healthy environment, equality in the community and comfort to be a full citizen. [The provincial coordinator commented that participants made reference to the Canadian Charter of Rights for Equal Citizens]. (MB

focus group participants)

The next subsection presents an overview of criteria for good quality home support that emerged as major observable trends in a qualitative analysis of the data.

3.6 Criteria for Good Quality Home Support

High-quality home support should enable community inclusion and citizenship. As stated by this participant, "It [home support] allows me to stay at home and enjoy a better quality of life" (PE interview participant). Participants in this research project identified four central indicators of good quality home support: consumer control, supportive relationship with home support worker and agency, consumer involvement in staff training, and adequate resources to support the home support system.

3.6.1 Consumer control

One of the most consistently identified features of quality service articulated by participants is consumer control. Many consumers want control over their caregivers, their schedules, and the types of services they receive.

of caregiver

Choosing a caregiver means finding a person who will provide care in a manner that fits with the way the consumer sees home support in the context of daily life.

I had one experience where I was away from home for something and I had arranged for the person to go into my home and he was good enough to take Chrissy [the dog] for a walk, which he didn't have to do. He could have easily left her there and she would have been in pain or done something wrong, but he was good enough to take her for a walk. . . . I wasn't there to ask him to do it and he did it just out of his heart. That's something that I really appreciated, just for that reason alone, he's up there with me . . . I really want to be with him, I want him to be around me because he's a good guy. . . . So it's not about the money you spend or the time that's spent earning it, it's about the quality of life and the quality of service that you're giving. . . . I'm not a widget and I'm not a wrench, a screw on an assembly line that gets turned by a bunch of people. I don't like to feel that way and often that's how you feel, if you get the wrong people doing things for you. (PE video participant)

For this consumer, choosing a caregiver with compassion and who views home support as more than a menial job makes for high quality home support. For others, a similar background, language, or cultural heritage is an important factor.

Persons who have been raised in a rural setting similar to my own, seem to be more compatible. (AB interview participant)

Most of the [home support] workers I've asked for were First Nations or francophoneâ€"I feel they work better with me. (YT interview participant)

For others, choosing a caregiver translates into more freedom to participate in society.

It is essential I choose my own caregivers and determine my care. If I don't have sufficient care I cannot participate in society as much as I would like. I often have to miss meetings and activities. (AB interview participant)

This quote illustrates the link between sufficient home support and community participation. Good quality home support means, for this person, the ability to be involved in the community.

over schedule

Consumers want control over their schedule of home support services, as this comment from a Yukon consumer illustrates: "I don't know if we'll ever get it, but it would be nice if we had a choice between daytime or evening personal care" (YT focus group participant). People with active, unpredictable lives need flexible schedules for home support assistance.

Control over scheduling is most important because I am not . . . sitting around waiting all day. I have a busy schedule and it is not a nine-to-five type of day. I need assistance at different times. (NS interview participant)

This comment clarifies the connection between a flexible schedule of home support services and the ability to work, which provides an important source of motivation, social connection, and sense of self worth.

Other participants made a similar observation about the limits on a person's ability to volunteer if home support schedules are inflexible.

Some time they change my times then and do not tell me, so that means I have to rearrange my time to do the volunteer work that I do. This has happened to me all the time. (NS interview participant)

The schedule of services can either enable or prevent home support users from interacting with their family and friends. In some cases users are faced with two unacceptable alternatives: sacrifice their social life, or sacrifice their physical health.

I have limitation to the time I want to spend with my family and friends. I would like to have choice and control. For example, if I am invited to a wedding or going out to dinner with family and friends or even having company in my house to be able to enjoy and have fun without being worried whether I will get someone to help me to bed or put me to bed. It is very frustrating when you think you could spend the whole night in a wheelchair because you spent a few minutes socializing. (MB interview participant)

An inflexible schedule of home support services compromises consumers' opportunities to work, volunteer, and socialize, which sets limits on the quality of life home support users can enjoy. Good quality home support service enables a level of freedom and self-determination that many non-disabled adult Canadians expect for themselves.

in types of services

Many consumers want to be able to choose the types of services they receive.

I do like the fact that some help is available at home on a per request basis even though I occasionally have to wait up to an hour or more. I would like support available for outdoor recreational activities. I would like to see more support staff other than the coordinator be available to accompany me to medical appointments because the appointments have to be scheduled when she is available. (ON interview participant)

Home support allows me paid employment within the community, which I value a great deal. There are, however, many occasions when I would like to have opportunity to receive assistance at work related to my job and am unable to receive the support I require because it is more related to my job than my own personal needs. I hope that one day, there will be supports in place for things like filing and photocopying through a workplace assistance program. (MB interview participant)

These comments illustrate that some consumers view good quality home support as responsive to the individual consumer.

3.6.2 Relationship with home support worker and agency

Consumers identified the relationship with their home support workers as the second significant factor determining quality service. Many home support users place high priority on respect. For some people, this means respecting the home support user's expertise in their own disability.

I think it's respect and trust. That they trust you enough to know what you need, so they don't second-guess you when you need something. . . . Respect and understanding of disabilities is something that's really important. Invisible disabilities are ones that even the health care providers don't understand. It's really difficult because you're treated as if you're making it up. (ON interview participant)

For others, this means respecting the philosophy of independent living and the role home support plays in supporting greater independence.

Home support should be viewed as a support to independence. Rather than a result or consequence of dependence. (AB interview participant)

It comes in the form of a person who is able to deal with the disabled on a one to one basis with a sense of humor mixed with compassion, empathy, and understanding. These people treat us like "we are not disabled," but instead just people in a special circumstance. They do not hold it over our heads, "that if it wasn't for ME, what could you do!" Instead they act like friends who are there to help a friend and don't gloat over what they are doing for us. Disabled people do not like to think of themselves as "being looked after," but they know they are people who need help to look after themselves. This subtle difference is picked up on and accepted by those who give good quality home care! (MB interview participant)

Respecting the authority of consumers as parents or in other relationships is also important. Two participants illustrated the opposite approach used by some home support workersâ€"a condescending and patronizing attitude toward the home support user.

In going to a doctor's appointment, if a worker tries to speak for me or allows the doctor to speak "over my head" and responds to questions that should be directed at meâ€"that is very bad. I need to speak for myself and gain that doctor's respect so that he sees me as an individual who makes her own choices. An excellent worker would not answer for me but refrain from doing so. I try to let my home support workers know from the moment they are hired that I do not appreciate being treated like a childâ€"not by them or a doctor or anyone. (NL interview participant)

It is important that the worker respects the client and treats them with dignity. For example, a worker told him that he should not have his dog because it makes the house messy and this was the first time that she had ever worked with himâ€"this was an example of treating a person with a disability like a child. (PE interview participant)

Other participants spoke of how home support workers must respect the consumer's privacy and confidentiality.

The person entering my personal life must respect my confidentiality. I have seen workers talking of the illnesses of those they visit. We do not want others to know certain details. For example, it is not necessary for others to know that I use a respirator at night. (QC interview participant)

Consumers want to have workers with skill sets, behaviors, and values that are compatible with the consumer's home support needs. Incompatible workers detract from the home support they provide. On the job this means that some consumers want their home support workers to contribute to an environment in which they can relax.

It is important for my [workers] to have a sense of humor! Making me laugh relaxes me and thus allows me to be able to eat better and faster. Because I am not able to chew, my food is blended and then spoon fed to me . . . if an attendant is not able to make me relax by laughing or otherwise, it is very hard for me to relax enough to eat, and so the attendants that often have been with me are those who are able to laugh at themselves and show a "devil may care attitude towards life!" If they are relaxed, then I am relaxed and that makes for a good life for me. (MB interview participant)

A member of the data analysis team described the importance of building rapport with his home support worker:

Even when there are small errors it is important not to overreact. One must not take the worker's dependability for granted. Gauging his humour, health and energy level are as important as gauging my own those first hours. Often I have negotiated a ride or errands for medical supplies or banking with the worker the day before. Maintaining such a rapport is crucial to both of us staying sane and keeping a quality worker. (Member of the data analysis team, personal communication, September 22, 2004)

Mutual respect between the home support provider and the consumer was discussed by some participants. An interview participant from Nunavut acknowledged its importance in the following comments:

Interviewer: Do you think home care understands what you need?

Participant: I think so, because when they come here they don't preach to me or say I'm doing something wrong. They always are positive and friendly and very polite.

Interviewer: Do they listen to what you have to say?

Participant: Yeah. I used to like when my older sister was alive and home care would come to my sister. I really appreciated the fact that they took the time to go to the house and check up on her and now they're doing it for me. (NU interview participant with interviewer)

Many consumers seek home support workers who see home support as more than a job. These three examples illustrate the intangible, invaluable things quality home support service can provide for consumers.

When my father passed away it was the most difficult time in my life. Having excellent attendants who supported me emotionally and gave me space to grieve with my siblings was very important to me. I needed my attendant nearby, but she knew when to wipe my eyes, and when to leave me be . . . it was amazing! (NL interview participant)

My caregiver and my mother's caregiver (who is the same person) was holding my mother for me when she was dying. Her love enabled me to be with my mother at a most critical time. (AB interview participant)

Recently I was out of town and was late returning. The worker was scheduled to finish work at 8:00 p.m., but he was still there when I got home at 9:00 because he wanted to make sure that I got the care I needed before he left. (NL interview participant)

Grief support, consideration, and empathy are examples of important qualities in home support workers as they reflect not only understanding of the feelings involved, but their expression also conveys the degree of sensitivity between the caregiver and the consumer.

For others, it is important that home support workers take initiative.

My expectations were that items and furniture would be put back in their place, which is very important for a person with a visual disability. And to do those things I cannot, for example, getting rid of cobwebs that persons with visual deficiencies tend to miss. These have to be removed. To have initiative to do these tasks, that [is] a quality in itself. (QC interview participant)

The relationship with administrators is also important. In quality home support it will be based on mutual respect, involving a good needs evaluation where the consumer feels listened to and understood.

If compatibility is an issue I would like to feel comfortable enough to phone a supervisor and know that something different will be done. . . . Having a scheduler who doesn't just send anyone when my regular people are sick, but actually looks at who has been trained to do the work that is needed. I would also like to be notified if my regular person is unable to come and be told who is coming in her place. I would also like to be notified if the time that I usually get care has been changed. Having a supervisor who phones immediately if there is a concern instead of gathering several concerns and presenting them out of the blue. (SK interview participant)

Many consumers evaluate the quality of their home support service through the actions of its administrators and workers. These relationships, which are vital to quality home support, must be based above all on respect for consumer direction.

3.6.3 Well-trained staff

Staff training is an obvious determinant of quality home support service. Consumers stated that they seek workers who are reliable, conscientious, and considerate:

My workers and service are reliable, i.e., will call me if they are running late or coming earlierâ€"to make sure it suits me. . . . The workers are always monitoring if the times are suiting my scheduleâ€"and ask what times are too early or too late. My workers change every year and then someone new takes over the case and sits down to make sure the service is working for me. (PE interview participant)

Staff should receive training appropriate to the services they will provide, for example, cleaning (in this case done inadequately):

Now when home care comes, I don't believe that they . . . provide an adequate service at this time. I'm entitled to about two hours once a week or two hours once every two weeks, but when they're here, they do the vacuuming, the sweeping and washing of floors, and the bathroom, they do that within 35-40 minutes. To me that's not an adequate job. I don't believe I should have to live in conditions that a person without a disability would not live in. (NT video participant)

Staff training extends beyond the initial qualifications a home support worker receives. A good quality relationship between a consumer and a home support worker depends on the worker’s being able to take direction from a home support user and listen to his or her particular wishes.

Some things that hinder my physical well-being is when a home health aide comes who does not know how to FOLLOW DIRECTIONS! If, for example, they are unfamiliar with the operation of a Hoyer lift this causes me great concern. If they do not mention to me when they notice a red spot on my body or any other unusual thing this is also bad. A home health aide may not wash me properly which can lead to infection. Home care can hinder my emotional well-being by sending aides who have not been previously trained which is stressful for both of us. Also aides who will not listen to directions and do what suits them is never a good experience. (SK interview participant, emphasis added by participant)

This quote illustrates the level of care consumers expect. Good quality home support workers respond to specific instructions from a person who is an expert in his or her own care.

3.6.4 Adequate resources for home support service

Cuts to home support systems across the country began in the mid 1990s when the federal government moved from cost-sharing to block funding arrangements with the provinces for funding of health care. In an effort to reduce financial demands on home support systems, many regions tried to download as much of an individual's care as possible onto volunteers, neighbors, friends, and family, which strains the home support user's social relationships and reduces his or her independence.

Many consumers consider adequate resources in the system to be an indicator and prerequisite of good quality home support. Having adequate resources means that people's needs are met:

[Good quality home support exists] when care or services are provided equitablyâ€"if I need five hours, I get five hours. Presently I need about nine hours and receive two. When services relate to needs. (QC interview participant)

Operating with adequate resources means that people are able to live, and do not have to focus all their energy on surviving, as these two quotes illustrate:

When do you know home support is working well? Your needs in relation to your disability are met so that you can pursue your life instead of your survival. (ON interview participant)

I am always struggling with basic lifestyle issues and feel I have not had opportunity to have goals beyond that. (AB interview participant)

Allocating adequate resources to the home support system means that consumers don't bear an unsustainable burden on their health:

I was reassessed because the government had cut CCAC [Community Care Access Centres] funding so I was getting two hours twice a week, and then they came in and because the funding had been cut, they cut me down to one hour. That's not even enough time to get my washing done here in the building. . . . In that hour, I was only able to bathe once a week and I had a very hard time doing the laundry. At that point, there was nothing they could do, they said. You can't really blame them. It was the government. I even went on my knees, and tried to vacuum. My husband phoned the CCAC. He was really upset. I know I shouldn't have done it, but . . . I couldn't stand it anymore. (ON interview participant)

Adequate funding of home support programs also ensures individual consumers do not bear an unsustainable financial load to maintain their health and citizenship:

When stress is low, my needs are met and it is not a financial burden. I can continue living life to the fullest. And it is not a strain on family relationships. (NS interview participant)

In addition, adequate funding for home support programs keeps informal support networks healthy:

My worker [is] getting the work done around the house so that the days that my husband is off work we will be able to spend time together as a family without having to do a lot of work. My worker is well organized and has a set routine which makes [me] and my family's life easier. (PE interview participant)

3.7 Summary

It is critically important that home support systems are supported with adequate resources over the long term. Demographic trends show that the proportion of Canadians 60 years and older is expected to grow from 17 percent today to 28.5 percent by 2031 (Romanow, 2002). All of us will, at some point in time, require or have family and friends who will require, home support. Cuts to home support services affect everyoneâ€"individuals with an impairment, informal caregivers, and home support workers among others.

Home support is clearly a determinant of quality of life for people with disabilities. In this study it was found that home support assisted citizens in meeting a range of life goals associated with, for example, work, health, socialization, and broader community participation. Consumers from across Canada identified several factors that reflect quality home support service including: consumer control, particularly choice with respect to caregiver, schedule, location and types of services performed. The importance of having well-trained staff who value consumer expertise within a respectful relationship was also emphasized by research participants.

A number of consumers in this study pointed out the connection between a flexible service schedule and the ability to work. Gainful employment has been found to provide an important source of motivation, social connection, and sense of self worth (see Doe & Kimpson, 1999). Other home support users fear losing home support services, suffering a decline in their health, and being incarcerated in institutions.

In an effort to reduce financial demands on home support systems, many regions have tried to download as much of an individual's care as possible onto volunteers, neighbors, friends, and family, which strains the users’ social relationships and reduces independence. Decreased home support can also put consumers' safety at risk. It is important to recognize that cuts to home support services limit citizenship opportunities for people with disabilitiesâ€"fewer opportunities to work, travel, form intimate family relationships, and to exercise their rights as contributing members of Canadian society.

4 Home Support in the North: Context, Issues, and Recommendations

While there are significant differences between the Northwest Territories, Yukon and Nunavut, there were also unique similarities that warranted a dedicated section within this report. Here we provide an exploration of several of the key issues that arose from the research conducted in the Canadian far North.

4.1 Context

Consumers who participated in this research project who live in the Yukon, the Northwest Territories, and Nunavut devoted considerable attention in their interviews, focus groups, and video clips to describing life in the North. In particular, they described how their lifestyles differ from those who live in the South. These factors shape consumer experiences with home support.

4.1.1 Close communities

Many consumers from Northern regions perceive a sense of community that is smaller and where people are more interconnected; neighborly in ways people no longer practice "down South":

In small places many people know the consumers so they help out. (NT interview participant)

Yukon is very culturally aware, especially with respect to First Nation culture. (YT focus group participant)

Down South, because it's such a large population you're not even concerned about a neighbor next door, but here, you see a neighbor who isn't getting the service you're getting and they seem to have a medical need, you're wondering why. You ask him questions. I don't think you would do that down South. You'd be more on your own. (YT focus group participant)

In terms of policy, some participants spoke of how the home support program should envision the entire community participating in home support:

[A particular individual who lives with impairments] has never asked for help from family and friends but notes that they are all one people in the community and everybody needs help now and then. People know she can't do much and visit, bring her country food, etc. You can't depend on family members only. It takes the whole community. (NT interview participant)

4.1.2 Different conception of health and home support

Activities such as chopping wood or going out on the land are a part of life and a part of healthâ€"and ideally such activities are recognized in the provision of home support in the North. Service is also shaped by geographic factors. Participants described a reality that differed significantly from that portrayed in the Beyond Four Walls video that was produced in Victoria, BC:

[Participant 1]: It seems to me that video [Beyond Four Walls] was too urban, there was no color.

[Participant 2]: They were living in an environment where the transportation is pretty good, the weather accommodates, they're living right in the middle of town which means there are lots of services all around.

[Participant 1]: Maybe even in the same building. Even the geographical area of Whitehorse is huge, you can travel 40 kilometers from one end to the other.

[Participant 2]: I was thinking the video [that we produce ourselves] could show [how] home health care includes somebody to chop firewood. You don't see that in the middle of Vancouver. (YT focus group participants)

4.1.3 Attempts to impose Southern ways

An Inuit elder in Nunavut pointed to a history of White people from the South imposing rules on the Inuit that are incongruous with their way of life.

I know that Inuit and White people are different, even the way they raise their children is different. There's a lot of difference between how they live. There's [also] a lot of difference between the North and living down South. If you have policies for different regions, for there and here, they're completely different, it's like black and white, the things that they do down south. They're not feasible up here; you can't use them at all. What applies up here would not apply to anyplace else. (NU interview participant)

They make rules and these rules that are coming from the South, from the White people, you have to follow them and it even makes you mad that you don't know how to relate to it or it doesn't really relate to your lifestyle. (NU interview participant)

These comments highlight the importance of recognizing a people's culture and history when considering support for individuals within a Northern communityâ€"particularly among those communities where people are striving to keep elements of their First Nations or Inuit cultures alive. It became apparent as we reviewed data generated from Nunavut and from traveling to Iqaluit that home support polices and practices must be developed in a manner that recognizes historical and present forms of oppression. The context is in many ways so very different from other areas of Canada that an imposition of Southern notions of home support would be entirely inappropriate.

4.1.4 Informal policies

In some northern territories there are no specific home support policies. In the Yukon the only legislation governing home support is a 1988 Order in Council which deemed the home support program to be part of the service that is provided by the Yukon Government to its citizens (Smith, 2003). In the Northwest Territories home support is governed by the Health and Social Services Establishment Policy (Government of the Northwest Territories, 1999) and the document, Program Standards: Home Care (Government of the Northwest Territories, 2000). These principles guide continuing care in general in the Northwest Territories.

In Nunavut, home support policy was developed using principles adopted by the Northwest Territories as a guide. At the time of this study the manual, Nunavut Home and Community Care Policy and Procedureâ€"Draft (Government of Nunavut, 2002a), governs home support service; the Draft Home Care Manual (Government of Nunavut, no date a) outlines the philosophy, values, mission, and vision of the Home and Community Care program. Standards for the home and community care program are available (Government of Nunavut, 2002b). The territorial coordinators who assessed policy in Nunavut relied heavily on the staff at the Nunavut home support office to complete the policy template. The regional coordinators for Nunavut commented that since Nunavut was a new territory with many priorities, it was difficult to determine when the issue of completing the home support policy documents would be addressed (NU template summary). As Nunavut policies are still in draft form, these standards appear to be open to the individual interpretation of each assessor or home support worker.

Consumers in all three northern territories discussed at length the pros and cons of an informal policy framework. Consumers in the Northwest Territories described an ad hoc approach where program standards stand in as policies, and there is no formal eligibility criteria, definition of disability, or appeal procedure:

Perhaps because we are a small population, home care is conducted in somewhat of an ad hoc manner and considered as one service among many offered by the Northwest Territories health system. There are no written policies or legislation covering home care in the Northwest Territories. . . . There is a document called Program Standards: Home Careissued by the Department of Health and Social Services and given to the Health boards. This is used as a policy manual, but it doesn't actually have policies in itâ€"it just has standards for policy development which are supposed to be developed at the board level. We were not able to discover any boards who had actually developed written policies for home care. (NT focus group participant)

In the Yukon, consumers pointed out a drawback of the lack of policy. "No policies mean that service is somewhat arbitrary, depends on the worker" (YT focus group participant). In Nunavut, the intent was for home support managers, assessors, and workers to follow the standards outlined in the Program Standards manual in order to "ensure comparability of standards and operatives across regions" (NU template summary). However, the Nunavut regional research coordinators found inconsistencies between standards and practice when they spoke with consumers:

During interviews in Nunavut, one participant spoke about how he used to have support "going onto the land" (day trips), but that this aspect of the program was cut when a new manager came on. This would seem to be an activity that would be legitimated under section 4.4 of Home Support Policy Principles. (NU template summary)

The risk that standards without policy will not hold sufficient weight to standardize home support service was mentioned by a consumer in the Northwest Territories:

[A consumer's] outlook on life is that he doesn't like orders being administered by one person, in the absence of clear policy direction. . . . He feels there should be policies in place, so that everybody involved knows what the rules are. Otherwise one person usually ends up making the decisions and they may or may not be good decisions. (NT interview participant)

Similarly, the territorial coordinator in the Northwest Territories noted that although regional health and social service authorities who deliver home support are charged with developing written policies to guide the provision of home support in their regions, "in most cases, these policies don't exist. Home support is administered on a case-by-case basis using an assessment package provided by the Greater Northwest Territories, taking into account the need and availability of resources" (NT template summary). The regionalization of policies has created similar gaps between program standards and administration that have been found across the country.

Conversely, consumers identified positive sides of informal policy. For example, it may create a more accessible policy environment for consumers with low literacy or whose first language is not English:

In the environment of small communities where most people know each other, the informal nature of the system has both pros and cons. The informal nature of the system may make it more accessible to consumers where literacy and language can be barriers (many people in Northwest Territories communities have low levels of literacy and speak an aboriginal language). . . . Rigid policies can ensure that everybody has the same standard of care, but they can also leave out those who don't fall within the strict guidelines. (NT template summary)

Consumers in the Yukon felt they had greater access to policy makers, and appreciated the opportunity to select a familiar home support worker or administrator:

Another difference is that you are familiar. It's so small you know who's providing your service or supervising. You can figure out which personality is better and pick the one you see more in your favor, hopefully. And also you know where your politicians are. In the Yukon, you can knock on the door of the Premier. You could go to a government office and have a meeting with him, if you wanted. (YT focus group participant)

Statistics in some of the northern areas such as Nunavut have not yet been compiled, for example, of the number of home support recipients, whether the home support recipients are receiving acute care or chronic care support, or the number of people who want or need home support but are not receiving it.

4.1.5 Unique features of assessment tools

The Nunavut assessment tool contains several components which reflect a lifestyle and environment markedly different from southern Canada:

The assessment tool contains several unique features in the client profile section which reflect Nunavut's northern environment and cultures. The tool determines languages spoken and understood by the client, including options of English, French, Inuktitut, and Inuinnaqtun. A number of details about the client's physical environment are assessed, including the type of residence; method of heating, cooking, and getting water; toilet facilities (flush, chemical, outhouse); means of bathing; laundry facilities; food storage capabilities; and other physical and environmental hazards. (NU template summary; Government of Nunavut, no date b)

Similarly, Nunavut's home support program involves a standard cultural component, which states that the program must respect traditional values of clients:

The home care program in Nunavut contains a specific cultural component standard, which states that the home care program must demonstrate respect for the traditional and individual values of clients. Criteria include: 1) Services are provided in the client's preferred language of choice where possible; 2) Service providers are sensitive to traditional and cultural issues and family dynamics; and 3) The place of IQ and role of Elders are respected. Programs and services are developed to encourage and sustain cultural values and procedures and positive family relationships. (NU template summary; Government of Nunavut, 2002b, Section 4.4: Cultural Component)

As stated earlier, actual services did not always reflect the principles guiding the program standards.

4.2 Issues

What follows is an overview of issues consumers in the North perceive as unique to their environment. Northern consumers also identified issues and policy recommendations that coincided with the hot topics identified in the rest of the provinces. These are presented throughout section 5 "Consumer Perspectives on Home Support: Issues and Recommendatons."

4.2.1 Lack of human resources

A significant barrier preventing people living in the North from obtaining home support services is the lack of human resources. This may result in a limited number of home support providers:

There is a small labor pool to draw on for home support workers. . . . Smaller communities have all the same problems as Yellowknife, but these problems are magnified in the smaller communities because of their isolation and high costs. There may be only one worker in the community. (NT focus group participant)

It may mean consumers must rely on people they know to provide home support:

Home support workers may be family members or members of a family you're feuding with. (NT focus group participant)

In Nunavut, especially in the remote areas, the lack of home support workers is part of a more general shortage of health care services.

There are no ceilings on services in Nunavut. The only limitation is on availability of human resources. The lack of human resources may result in a ceiling on home support service availability. It was noted during research in Nunavut that the availability of basic services such as nurses has been limited, and that three years ago each of the remote towns on Baffin Island [was] assigned one nurse and one vehicle. (NU template summary)

In communities with limited human resources consumers rarely have backup assistance when a home support worker is not available. As one focus group participant from the Yukon stated, "One of the problems with a small community is the lack of depth of quality people, so if anything goes wrong, they can't just pick up the phone."

4.2.2 Limited training opportunities

Consumers from each of the northern sites stated that they do not feel their home support workers have adequate access to training opportunities:

I just don't think we're a big enough community. . . . I'm sure Vancouver has more staff on board. I've never heard of a workshop for a home care worker, in the last 50 years that I've lived here. The last I heard that they were doing any training was on computer. (YT focus group participant)

Online learning has been identified as one means to provide training to residents of the North. This is particularly appropriate for those, such as First Nations and Inuit personnel, who for cultural reasons wish to remain in the North while obtaining their training.

4.2.3 High cost of living in the North

Several consumers felt that, due to the high costs associated with living in the North, home support workers who travel long distances between clients are not receiving adequate compensation:

Cost of living is higher and workers are not adequately compensated. (NT focus group participant)

Consumers also felt that disability pensions are too low to cover the costs of living in the North:

It is important for disabled people to have enough money to live on. . . . The cost of living is higher in the North and it is difficult for disabled people to live on what they get from income support. (NT interview participant)

4.2.4 Consumers must travel South for specialized care

Several people discussed problems associated with the lack of specialized services in the North. In fact, such services were described as "nonexistent" by some participants residing in the North (NT focus group participant). People may have to "move to a larger centre in order to get the services they need" (NT focus group participant); and specialists may travel to the North yearly, but it may be difficult or impossible to implement that specialist's recommendations without their assistance:

Most home care services have someone who will go in and measure for bars for the bathroom or something like that, but in a place like Fort Simpson that only has someone who knows how to measure go in once a year, they'll measure and order the bars from Edmonton, the bars will arrive, and there was one to help someone in the bathtub and the bars were put on totally across the room. It's just a lack of the accessibility of qualified, knowledgeable special services. (NT focus group participant)

Some people with disabilities in the North have to rely on receiving services by traveling or even moving to the South:

[Interviewer]: How come you go to Ottawa a lot?

[Participant]: I take the . . . injections, to stop my spasticity. . . . I'm stuck with them, but it helps. I go every three months, four times a year. (NU interview participant)

In the Northwest Territories' foster care program, foster parents of a child with disabilities were given a choice of moving to Edmonton (1500 km south), where the child could be close to medical services, or staying in Yellowknife without services. (NT focus group participant)

In fact some consumers who require specialized services spoke of having no choice but to travel:

I have to travel for much medical treatment and I wouldn't be alive today if it weren't for medicine and doctors [down South]. (NU interview participant)

In Nunavut home support workers do not always travel with consumers, and without adequate backup family members must provide care, even if this means taking time off from paid work:

[Informal Caregiver]: When he was sick, the home care worker was supposed to be there.

[Interviewer]: So the home care worker goes to Ottawa and stays with you when you have to go?

[Informal Caregiver]: Only if they want to, if they don't want to, they don't go. . . .if I can't find someone to go [with me], I have no choice, I have to go myself. (NU interview participant)

4.2.5 Inaccessible environment

The environment played a major role in participants' descriptions of home support issues in the North. First, ice and snow contribute to consumers' isolation during the long winter months:

What there is up here is the ice, on the roads and on the sidewalks. It builds up and it's hard for everybody, particularly for people who have a [physical] disability. (NT focus group participant)

I don't get out much but when the snow comes, it's more difficult to wheel me into the store but that's where I mainly go, to the store. I was there today. My son took me there and my grandson was there too, to help me. I like going there, that way I can choose what I want. (NU interview participant)

The temperature also affects consumers' ability to receive home support. Home support workers in the Yukon don't work when the temperature is below -35 degrees Celsius, which may leave consumers without care.

Winters the last couple of years have been a bit milder but you get this letter around every year that says if it's below -35, we won't be coming. What about people who require. . . . I think I can do without, but what about the people who do require bathing? Who makes the decision about who really, really needs it? (YT focus group participant)

Consumers described the built environment of small communities as full of barriers, which limits their citizenship opportunities in their communities and increases their dependence on others:

Because I live in a small community it is not very accessible for anyone with mobility issues. It is very hard for me to get around within the town. There are many activities that I used to enjoy around the community but are no longer accessible for me. I enjoy trips to Alberta where my mobility is not usually an issue. (NT interview participant)

During the last year I became unemployedâ€"my mobility was becoming an issue in the long, cold winter months. I still however continue to do a lot of volunteer work in and around the community. Exercise is an issue as the pool here is not accessible for me (one of the few exercises I still enjoy). However, we are getting a new complex within the next few years which will be very helpful. . . . I enjoy socializing over coffee, lunches, evenings out and Bingo. However, there are many physical obstacles that I encounter quite frequently. . . . I find it different in the South (Alberta) as I don't always have to depend on someone else to help out. (NT interview participant)

Participants spoke about consumers living outside of cities and towns and how it was unlikely they would have access to any home support:

I was working with some people the other day and someone was worried about their uncle, living in a cabin, 20 miles down the road and he couldn't get any services, home care, anything. He's in a wheelchair. (YT focus group participant)

A client who moves residence within the territory is assured of maintaining their home support services as long as the client lives in or close to a town or village. The potential change in service exists when, for example, a home support worker serving clients 60 kilometers apart, takes more time than a home support worker serving clients 10 kilometers apart. The home support worker with a long distance to travel may not be able to schedule as many clients as the home support worker with a short distance to travel. Also, if a client were not accessible (i.e., living in "the bush") then home support services would not be available. (YT policy template summary)

4.2.6 Translation

The role of interpretation services was clearly important to many who required them. One consumer who felt the interpreter's services were very useful, stated:

When [the nurse] comes, I use the interpreter and I find that very helpful because the nurse can tell me how I'm doing, whether I've improved or gone down. And they keep me informed about my next doctor's appointment and stuff like that, how my health and blood pressure are doing. (NU interview participant)

Two consumers in Nunavut discussed problematic issues related to language translation. The following segment is from an exchange between two researcher interviewers; a community elder who requires home support, and an informal caregiver (who adopted the elder as a grandfather). The consumer talks about how it feels going to the hospital or doctor's office or meeting with a home support administrator with an official interpreter who sometimes translates only what the nurses or doctors say, versus going with a family member, who in this particular instance translates everything, including detailed procedures and all that the consumer has to say:

[Researcher 1]: When the home care people come, do they get along with you and talk with you? Are they friendly?

[Consumer]: I feel they don't know anything about me . . .

[Researcher 2]: How is language or communication? When the home care nurse comes once a month, do they come with an interpreter? . . .

[Consumer]: They have interpreters that work with them.

[Informal caregiver]: But some of the interpreters don't really tell you what needs to be done or what has to be done. It's almost like they're embarrassed to say it or something. They don't explain.

[Interpreter]: It's a Nunavut problem, if you're not trained to interpret. I don't know the medical terms. . . . They also interpret only for the nurses or the doctors.

[Researcher 2]: They don't interpret what he [the consumer] says?

[Interpreter]: Sometimes they don't.

[Researcher 2]: So he gets one-way communication? . . .

[Consumer]: Some of the interpreters don't interpret everything, that is very hard. When I go with her [informal, unpaid caregiver], she's not afraid to say things, things that have to be said. (NU interview)

Information is power. Consumers feel disempowered if they cannot access information or if they do not have an opportunity to comment or question their health care providers because of inadequate interpretation services.

4.2.7 Insufficient services available

The services that are available in the North vary depending on the size of the community. For example, in the Northwest Territories communities vary in size from the City of Yellowknife with a population of about 18,000 to small aboriginal communities with populations of several hundred. A wider range of services is available in the larger centres (NT policy template summary). Consumers identified several areas of service that they lack, for example, available subsidized accessible transit:

The vehicle doesn't operate on Saturdays and we don't have money so we have no means of going anywhere during the weekend. (NU interview participant)

One person interviewed in Iqaluit was not yet receiving home support. She described feeling as if people did not know she existed. What follows is an exchange between this participant and a researcher who was one of the regional coordinators for Nunavut:

[Researcher]: What do you do during the day?

[Participant]: Just stay in the house, I have no transportation, I have no support.

[Researcher]: What would you like to do?

[Participant]: Go places I would like to go if I had transportation.

[Researcher]: Would you like to go to church?

[Participant]: Yeah, I would like to go a lot. Just see people I haven't seen for ages because I can't go out. . . . I want someone to know that I actually exist. I don't want my disability to stop me, but I have no choice because nobody is helping. . . . That's the main thing when you're handicapped. (NU interview participant)

Respite care for caretakers has been singled out as being in need of more resources (NT policy template summary). Consumers may not be able to access 24-hour coverage or respite for family caregivers:

[Informal caregiver]: He [the consumer] was down South about a year ago, living down there about four or five years ago. . . . There was full-time coverage there and it all stopped when [he] came back [to the north]. (NU interview participant)

Not all services that are needed, such as assistance with shopping, are available. In fact, one participant from the Northwest Territories referred to her level of service as "very minimal basic services":

I've got a disability that doesn't allow me to have a car. There's no shopping service here, so what do they want me to do, take a taxi? What if I had a limited income? Or take a bus and have to take all my grocery bags upstairs? That defeats the purpose of having home care. I have a disability yet they want me to do all this grocery shopping. (NT focus group participant)

What I receive at this point is very minimal, basic services. . . . I'm unable to drive, so one of the things that I find lacking in this community is the ability to provide shopping for someone with my limitations, more so in the winter than now because I do need help even walking outside. It's difficult for me to get to the grocery store, to find the groceries and then to bring them home. Carrying the basket is really difficult, this is the arm that is impacted but I have to use it to carry the basket. Reading containers is really difficult and as well, trying to read the prices at times is difficult. What normally would be an hour's shopping for someone else, could take me a good three hours if I wanted to pick up everything I needed and make sure I had the right product that I wanted. (NT video participant)

4.2.8 Jurisdictional issues

Consumers identified different issues that relate to jurisdictions in the north. First, people living on the border between a province and a territory may have a difficult time accessing services:

Fort Smith is right on the Northwest Territories/Alberta border. Sometimes when people live on the Alberta side of the border, there is a jurisdictional conflict about who should provide services. (NT focus group participant)

First Nations consumers must negotiate their place in several systems to determine which governing body will provide home support servicesâ€"reservation boundaries, the system under the Indian Act (1985) that determines whether a person is entitled to Registered Indian Status and its accompanying benefits, the Department of Indian and Northern Affairs Canada, and possibly the health region of the province or territory. The Yukon Territorial coordinator described the situation as discussed in the focus group in this way:

It is important to note that in the Yukon there are approximately 14 different First Nations. Each First Nation band may or may not have a home support program. First Nations bands that do provide home support would receive transfers from DINAC [Department of Indian and Northern Affairs Canada] for funding this or related programs. Members of First Nations bands that do not provide home support would have to go to DINAC to request home support. Each First Nation band was not questioned on their home support policies. Approximately 25 percent of the population of the Yukon is of First Nation descent. Of this 25 percent, only some may be status First Nation. People who are not status First Nation can use YTG [Yukon Territory Government] services. People who are status First Nation would be told by YTG to first request the service from their First Nation band; if the service is not provided by the band, then the individual could apply for YTG home support. There is no duplication of services, according to YTG. (YT focus group summary)

Due to the location of her home and jurisdictional issues between the band, the province of Alberta and the Northwest Territories, another consumer described how she falls through the cracks between these three governing bodies:

I'm a hidden disability I guess. Maybe two minutes down the highway there's our home which happens [to be] across the Alberta border. So I'm falling through the crack now. They're trying to say you're on the reservation but according to the band, it's not reservation as of yet. Indian and Northern Affairs has not chiseled that in stone yet. So I don't know what's happening. I still go under Northwest Territories and all my papers are Northwest Territories until these people consider them a reservation. If they get themselves considered a reservation, I'll be alright, but otherwise . . . I have nothing. (NT focus group participant)

4.2.9 Confidentiality

In the Yukon focus group, confidentiality issues were identified as one of the most pressing concerns. Some consumers felt that fears over breaches of confidentiality prevent some people from seeking home support. This fear was described in the following transcribed focus group discussion:

[Participant 1]: A lot of people can't or won't get help because they're afraid of becoming vulnerable [and] of their personal information getting out, indirectly. . . . We talk about confidentiality, and in the bigger picture of the rest of Canada that might actually mean something but here, we might see each other on the street.

[Participant 2]: People certainly feel as if you're quite public when you're receiving public service, that's what it comes down to. I remember walking into the hospital, until they built this one, and the communicable diseases office was in the main hallway with a sign over it. That's where you would go to sit if you had to go and deal with that kind of stuff. If that's not obvious, what is? (YT focus group participants)

Some consumers felt that there is a stigma associated with receiving home support services:

Service recipients are known to the public because of the small community size. The "small town" stigma with respect to receiving services exists. (YT focus group participant)

Consumers worry that home support workers may feel pressure to discuss their clients' private circumstances:

Confidentiality is a problem in a small town where everybody knows everybody else. People may ask workers to discuss their clients. (NT focus group participant)

[Participant 1]: Because we're such a small community, we know everyone and the nurses think you won't mind me bringing this up, so it's brought up, whereas I do mind the fact that you brought it up. I don't think they're held to the same standard of confidentiality as they're able to be held to in larger communities.

[Participant 2]: I think in some cases it's harder for home care workers to keep the confidentiality they should, especially in smaller communities, because I as a home care worker I'm going into [an individual's] house every day and people are saying to me, I saw you going into [THAT PERSON'S] houseâ€"what's it like in there? There is this constant asking; you've got to always be on your best behavior to make sure that you don't slip. And that's a stress for someone who takes the confidentiality seriously. (NT focus group participants)

4.3 Recommendations

Northern consumers had several policy recommendations to offer that are specific to the North.

4.3.1 Support elders' and others' desire to stay connected with culture,

community and land

Home support workers must have an attitude toward elders that values their experience. According to Northwest Territory participants, having a respectful "attitude" is part of the home support worker's job (NT focus group participant). Where appropriate, home support should create opportunities for elders to contribute to their communities, involve outings, and allow people to connect with the land.

[Consumer]: When we had a different manager, he used to make arrangements on Saturday or Sunday, on the weekends, for us to go out on picnics or in the summertime take us out, to be out on the land. Since they changed management, they've never had anything for the weekends. . . . My children take me out once in a while. . . . We were outdoors a lot when we were hunters.

[Researcher]: Can you describe what a day out would be, is it a full day, is it far, how would you get the transit to get there? What would be the ideal? . . .

[Consumer]: Saturday, Sunday, we would go out for the whole day and just go different places, different areas, whenever we could.

[Researcher]: So it's not far, it doesn't sound like a big deal.

[Consumer]: They had vehicles so they could get us home.

[Researcher]: It sounds like you were very disappointed [to no longer have this service]. (NU interview)

Consumers spoke about wanting to be consulted with regard to how their living arrangements (as well as personal assistance) could support a desired lifestyle. In the case of this consumer who lived in an elders' home, a cold storage area would make it possible to maintain some of his traditional practices:

I would like to see a porch built or some storage area. I have frozen meat sometimes, I could put it there. I don't like to put it in the freezer because it doesn't taste the same. My partner sews seal skins sometimes and they have to be in a cool place, so if there was a storage area for this place, it would be good. She does knitting and sewing all the time. (NU interview participant)

Home support should be in place to connect consumers with their community.

[Consumer]: It's very important that I have something to do, even just little things, recreation or a place I could work or have work to do, not just be sitting here.

[Researcher 1]: You talked about with us before [the interpreter] came that you carve.

[Researcher 2]: What are the rules about carving?

[Informal caregiver]: Not allowed, carving around [the] elders' home area, due to the dust. He was carving for so many years and he loved to carve. . . . He would be out there, just sitting and carving, and he's not allowed doing that.

[Consumer]: I would love to be able to make harpoons that could be taken somewhere, teach kids how to learn to make harpoons. It's not hard to do but I would be able to do it.

[Informal caregiver]: It's so important. Before his neck injury, he was getting calls from the schools to go to . . . after his neck injury, that stopped.

[Consumer]: I would be called to the school to talk to them even and they don't even do that now. I still want to go. It's good to get out of here, better for me to be with them, so I would like to do that again. (NU interview)

We don't get enough exercise when we just stay here [inside]. We're not even taken to the church for services. . . . I would appreciate going to any one of the churches; it would be really good. (NU interview participant)

4.3.2 Develop culturally sensitive training programs and recruitment

programs for home support workers that emphasize the

importance of maintaining confidentiality

Consumers in the Northwest Territories indicated that they would like to see a stronger effort made to recruit Aboriginal home support workers and administrators.

Training programs for home care workers should be sensitive to Aboriginal culture and language. Recruitment programs should be developed to encourage more Aboriginal people to become workers and managers in the home care program. (NT focus group participant)

Many northern research participants felt home support workers need much more substantial training around confidentiality, as this story illustrates:

They need proper office procedures and protocols and training. [My roommate told me] I got a message from home care. . . . They must have not hung up the phone properly because all of a sudden they were talking among themselves. I listened to the message and it was kind of muffled, they were talking about this patient, this other client, they gave his name, they said what was wrong with him, they said he was grouchy. This conversation went on for five minutes and my roommate heard it and I heard it. I know how important confidentiality is at the Council and that just blew my mind. I saved that message. When a home care worker came over, she did her stuff and then I said, I want you to listen to something. I played this and she's standing and listening and laughing. Oh yeah . . . she just thought this was a big joke. . . . After it was finished, I deleted the message, and here's me, the client, having to give her this lecture on confidentiality. I said you're lucky I got the message. You're lucky I deleted it. Yellowknife is a small town, people talk, people know each other, it would have been so easy for information about that other client to be [released]. (NT focus group participant)

4.3.3 Develop training and codes of conduct for interpreters

In addition to training programs that teach medical terminology which are offered in some areas of the North, interpreters must adhere to a professional code of conduct which not only protects confidentiality, but also requires the interpreter to interpret all that is being said by the health care provider and the consumer of home support services.

4.3.4 Pay family members for caregiving

Given the limited availability of personnel in the North and the impact climate has on the working hours of existing personnel, many research participants stated they wanted home support policy to acknowledge that family members may be the preferred (or only) option for home support by allowing consumers to pay family members:

Relatives taking care of people with disabilities should receive financial support equivalent to that given a home care worker doing the same work. (NT focus group participant)

4.3.5 Develop policies for the North in the North

Particularly where indigenous people reside, home support policy and practice must make sense from a cultural as well as geographic standpoint. Policy must be introduced with a cultural understanding of concepts such as "support" and the "role of the community." Home support activities, for example, might include chopping wood or taking consumers for day visits back to the land.

4.3.6 Health care must remain free for First Peoples

Finally, consumers indicated the value they place on receiving free health-related services such as home support.

It's important that aboriginal people continue to get free health care. . . . Some aboriginal people won't be able to pay for [their] own health care. (NT interview participant)

4.4 Summary

Within this study we were able to undertake an initial exploration of some of the unique geographic and cultural factors that affect home support policies, services and consumers in the Northwest Territories, Yukon and Nunavut. In particular, there is a shortage of personnel and limited training opportunities contributing to insufficient home support service for those who live with impairments in the North. The geographic environment and climate (i.e., temperature, snow, ice) reduce physical accessibility and services. Some individuals living in remote communities are required to move or travel South to receive their health care. Receiving services in an appropriate language with professional interpreters was identified as critically important by residents of the North who participated in this study, many of whom belong to First Nations or Inuit communities. The jurisdictional issues between territory and the federal government, First Nation reservation, or province were identified as complicating factors that interfere with home support service delivery. We were made aware of individuals who had fallen between the cracks and, as a result, were not able to receive any service. An additional factor that affected many was the additional cost of living in the North. In summary, based on the comments made by people with disabilities residing in the North, we propose the following recommendations:

1. Support elders' and others' desire to stay connected with culture, community and land;

2. Develop both culturally sensitive training programs and recruitment programs for home support workers that emphasize the importance of maintaining confidentiality as well as professional interpretation services;

3. Pay family members for caregiving; and

4. Health care must remain free for First Peoples.

It is critical that those who live in the North are involved in designing home support programs in a manner that respects and supports their ways of life, cultures and values.

5 Consumer Perspectives on Home Support: Issues and Recommendations

During the initial stage of this project, CCD representatives who would be involved in overseeing the collection of regional data came together in a face-to-face meeting. At this time central issues affecting home support users were identified based on grassroots community work and previous research. The data analysis process used these central issues to organize ideas and develop sub-themes from the data collected. Unanticipated themes also emerged from the data. This section is devoted to elaborating and discussing the perspectives and recommendations of home support users in relation to these issues.

In collaboration with home support users across Canada, the research and analysis teams identified several areas or issues related to home support that have become increasingly problematic for people with disabilities due to political and economic ideological trends. Home support users across the country contend that each of these areas must undergo funding, policy and service revisions if home support is to facilitate rights, citizenship and quality of life for people with disabilities that are comparable to the non-disabled public. What follows is a brief outline of each area or issue, a description of the ways in which they have become problematic and policy recommendations that would lead to improvements.

Regions and provinces may look today to reduce home support services as a way to respond to the pressures placed on their health care budgets, however the long-term and systemic implications of such action must also be consideredâ€"the associated human, societal and economic costs. Adequate home support helps people with disabilities to attain their goals of greater independence and self-sufficiency within their home and society.

In the subsections to follow, central themes from the investigation are discussed as separate issues. It is important to understand the specific problems that characterize each of these issues in order to provide specific recommendations for improvement. However, it is also important to recognize that there is considerable overlap and interconnection between these issues. For instance, the problems described with the assessment process, regionalization and user fees, are all in some way connected to the trend of all levels of government to "streamline" health services to satisfy (or perhaps to justify) budget cuts to health care. Many of the issues presented have become problematic for home support users precisely because government officials, policy makers, and home support program administrators have chosen to prioritize the interests and perspectives of medical professionals, economists and private industry over those of people with disabilities. It is critically important that we understand the ways in which the pervasive nature of elitist and ableist ideologies inform the creation of disabling policies, services, public spaces and attitudes.

Increasing home support funding is one of many necessary steps forward. However, in isolation, this is insufficient. If government officials, policy makers and administrators are to ameliorate the many problems with home support identified in this report as articulated by people with disabilities from across Canada, they need to recognize the role of disabling attitudes and ableist ideologies in policy making, and the necessity of utilizing the perspectives of consumers in the creation of home support policies.

An analysis of the political, economic, and ideological factors that have contributed to the current home support crisis for people with disabilities and some of the ways of understanding the lack of credence placed on consumer perspectives are provided in section 6 of this report, "Discussion and Conclusion."

5.1 Assessment and Eligibility

In order to receive home support benefits, people with disabilities must first undergo an assessment process that is meant to evaluate their eligibility for home support services as well as the level (i.e., number of hours) and type of assistance (e.g., bathing, meal preparation) or service required. Home support users are usually required to undergo periodic reassessments on an annual or semiannual basis in order to determine any changes in health or living circumstances that would justify a change in service. The assessment, usually conducted by a home support administrator, social worker, registered nurse, or in consultation with a physician, consists of a series of standardized questions and tests designed to measure a person's degree of functional impairment, current economic resources and amount of informal support available from friends or family members. Home support services and funding are then assigned based on the assessment, to satisfy needs that cannot be met through current financial resources or social networks.

Due to the allocation of fewer dollars to government-subsidized home support and the resulting restrictions on services, the assessment process has become increasingly rigid and exclusionary. People with disabilities have found it harder to qualify for an adequate level of home support while current home support users must fight simply to maintain their present level of service, regardless of whether their disabling condition is stable or deteriorating. Some regional health authorities (RHAs) have placed strict limits (often referred to as ceilings) on the amount of home support a person can receive in a given month, which particularly restricts the life opportunities of those with higher service needs. Other RHAs have tried to save money by continuing to offer home support services, but only to those with the highest degree of need, and then primarily to meet only their most pressing biomedical needs. In Prince Edward Island, for example, the assessment prioritizes individuals with higher risks and more acute care needs, or whose primary caregiver is at risk of stress-related burnout (PEI template summary). Another consumer described the assessment process as a "little criteria list" that, although relied upon to determine eligibility, was basically inapplicable:

Here I am getting older and having more limitations, yet the criteria, what I can access, has decreased from what I was able to access 20 years ago. A perfect example of this criteria is she said that they wouldn't do dusting for me because their philosophy was that [they] wanted people to have some exercise to retain their muscle motion, blah, blah, blah. I'm sitting there thinking here I am a person with a disability, I can hardly move as it is. But I go to work from 8:30 till 5:00 and I am damn tired when I come home. I don't need to dust to have exercise. But they couldn't see that. . . . They just followed their little criteria list. (NT focus group participant)

Those who are assessed as having fewer needs are in danger of having their services cut or eliminated entirely. However even those with "lesser needs" would become in danger of institutionalization, major health consequences, or death if these needs are not satisfied (Hollander, 2001).

Currently Alberta, Manitoba, Ontario, Québec, Nova Scotia, Prince Edward Island, and Newfoundland and Labrador have ceilings on the amount of support a person can receive. British Columbia and Saskatchewan do not have a ceiling set in provincial policy, but service limits are determined by regional health authorities. Nunavut and the Northwest Territories are the only two regions in Canada that do not set upper restrictions on the amount of home support a person can receive (Canadian Home Care Association, 2003), although in reality our research shows that home support worker availability sets a de facto ceiling on service in Nunavut, and consumers in all three northern territories can typically only receive service if they live relatively close to, or in a town.

This has led many people with disabilities to feel that the same programs that are rhetorically there to help them be independent and healthy are in effect limiting community supports to a level that necessitates, in some cases, institutionalization. Indeed, many research participants with disabilities described having encounters with assessors who suggested institutionalization (NL focus group). One participant from Prince Edward Island argued, "Any reassessment done is done in bad faith. It is not about the person, it is about the money, and decisions seem to be made in advance" (PE interview participant). For many home support users who must already make do with minimal or inadequate service, even a small reduction in service can result in a drastic change in life circumstances. Pervasive fear and inability to plan for the future is a direct result of the persistent threat of having one's services reduced or eliminated. As one consumer stated, "people are scared of letting each other know what they have or don't have for FEAR that they'll lose it if it comes to someone's attention" (NS focus group participant). Because of this fear, home support users feel less able to ask for clarification or express dissent about the nature of home support policy, service or their home support workers due to the very real possibility that they will be labeled "troublesome" and incur retribution in the form of further cuts to their services. Retribution for speaking out was described by a consumer from Nova Scotia. This individual stated, "The system has a desire to give sponge baths over regular baths even at the objections of clients. When they speak out, they are denied altogether" (NS interview participant). Consumers are often expected to be passive and grateful. Fear of speaking up also perpetuates abusive relationships between users and formal or informal caregiversâ€"home support users feel less able to request new workers. Incidents of abuse are of great concern for people with disabilities, and research shows that the incidence of abuse is particularly high among those who require assistance from care providers (Sobsey & Doe, 1991).

When their service levels are cut, people with disabilities are forced to rely on the informal care of family and friends, which can place significant stress on relationships and cause declining health for both caregivers and recipients (Bookwala & Schultz, 2000; Katz, Kabeto, & Langa, 2000). In Nova Scotia, consumers can only qualify for home support if it is determined that there is a risk of informal support network breakdown (NS policy template summary; Government of Nova Scotia, 1997). As one Nova Scotia participant stated, "I don't like having to rely on family and friends. I believe it ruins relationships and makes you feel less of a person" (NS interview participant).

The increased emphasis on visible functional limitations and biomedical need during the assessment process fosters little appreciation for the importance of home support to facilitate citizenship and quality of life among consumers. Instead, it forces people with disabilities to be complicit with a definition of disability that emphasizes inadequacy and dependence, rather than their inherent value to the community as citizens. The emphasis on visible functional impairments during the assessment also marginalizes those who have chronic, non-visible physical or mental impairments. Such impairments may not be easily measurable using a biomedical assessment and so people with these impairments tend to be discriminated against during the assessment. As one research participant described, "I often feel discriminated against because of my high level of mobility and intelligence. The chronic pain aspect of my condition is often ignored because it is not visible to the human eye" (AB interview participant). Another participant stated, "No one doing these assessments knows what dysreflexia is or how dangerous it can be. When I explain that my blood pressure goes through the roof and I am at risk of stroke if I do not receive assistance in 20 to 30 minutes, they think I am exaggerating to get more care" (NL interview participant).

Providing service at a level that meets only the most basic needs does not give people with disabilities the opportunity to contribute to the community socially, politically or economically. It also perpetuates negative stereotypes of people with disabilities as dependent "burdens on the system." People with disabilities suffer decreased self-esteem when they are consistently forced to demonstrate their dependency during the assessment process and are made to feel guilty when they request higher service levels than administrators are prepared to offer. For instance, one participant described how home support staff admonish home support users that their home support was detracting from funding for acute care beds (NS focus group participant).

The cuts to home support services across the country have been dealt with differently from province to province and from region to region. However, in terms of the assessment process, the overall effect is the increasing of restrictions on home support services, a more invasive, intimidating and discriminating assessment process, and an increasing emphasis on biomedical needs of people with disabilities at the expense of citizenship and quality of life.

5.1.1 Assessment and eligibility recommendation:

Broaden the criteria for eligibility and the definition of health

Assessment processes tend to emphasize visible, and objectively measurable functional limitations over less visible physical, mental, and cognitive impairments. This biomedical definition of disability does not accurately reflect the ways in which people live with disabilities, nor the spectrum of accommodations people require to exercise their citizenship in society. Quality of life is necessary for the maintenance of good health and citizenship. Consumers contend that the assessment process should recognize the need to provide services that attend to more than a person's basic physiological needs. The scope of existing programs should cover medical services, as well as services that promote psychosocial and spiritual health. The assessment should aim to provide a level of support that enables users to satisfy life goals by fostering self direction, quality of life and community participation.

Because I appear to be highly mobile, my chronic pain issues are often overlooked and misunderstood. (AB interview participant)

Once I was reassessed early because I requested a service they weren't providingâ€"someone to accompany me on errands in my car. They felt that since I thought I had time for this, that I was getting too much care, and they cut back on my care. . . . It lowered my quality of life. It cut back on my ability to get help with my clothing and seating in the afternoon. This could create problems with pressure sores. It compressed all the activities I need help with into the morning. (NS interview participant)

As articulated by one Ontario participant, the assessment process does not consider the negative effects of cuts to service for the individual consumer or the community.

[The cuts to my services were] really hard for me to deal with because now, my life energy is going to [be] spent surviving, and I'm probably going to have stop some of the other stuff that took two and a half years for me to get into. Some of the committees and things like that, they were things that I've always wanted to be involved in, and I finally had the confidence and the energy and everything all set up to be able to do it. Now, I don't know what's going to happen with this. I might end up being a shut in again. (ON interview participant)

The following quote expresses the notion that individuals with disabilities can be interdependent members of a community rather than ‘burdens’ on society.

[One of the things] that should be taken into consideration is what would be the benefit to the community if proper home care is provided? Will the person be able to work, will this person be able to do volunteer work? Will this person be more socially active? What will be the long-term benefits of providing proper home care? (NS focus group participant)

5.1.2 Assessment and eligibility recommendation:

Make the assessment process comfortable and accessible

People with disabilities should be clearly informed of their rights and options during the assessment process and feel comfortable in asserting their ideas. In order to foster clearer and less intimidating communication, the assessment process should be explained and conducted by someone who is familiar with the user's situation. Policy information should be made readily available and accessible in plain language. Consumers should be allowed to have an advocate presentâ€"perhaps someone from a consumer-directed disability organization.

Make it so the people applying for services are not intimidated by the process of eligibility criteria. The terminology being used should be such that it is understood by most people applying and easily read. (AB interview participant)

The level of bureaucracy was seen as a problem as was the lack of availability of the province's home care policies to people with disabilities (or at least the availability in plain language form). (PE focus group participant)

One of the things that is wrong is that they only give you the information that you ask for. If you don't ask the right questions you don't get the right answer. If you can't ask the right questions because you can't see the policy book, you can't ask the right questions and do not get what you need. (PE interview participant)

We heard repeatedly that consumers had difficulty obtaining policy information. This clearly placed them in a disadvantaged position from which to self-advocate.

5.1.3 Assessment and eligibility recommendation:

Reduce mandatory reliance on informal supports

Over-reliance on informal support networks to supplement home support hours often degrades healthy relationships. People with disabilities should not be expected or required to rely on family members, friends, neighbors or volunteers to provide support without compensation.

Sometimes, it feels as though I am expected to depend on friends, relatives, neighbors, co-workers and my partner to get my basic needs met. This is the case sometimes with the need to go to the washroom at work. This does very negative things to one's self-esteem and self-worth, particularly when you have co-workers who are not comfortable with assisting either. (MB interview participant)

As a young disabled individual, there's very little support for individuals in the home. And then once you are out on your own, [home support staff are] constantly asking what can your family do for you? . . . The client gets the minimum amount of service required to meet the client's unmet functional needs and at the same time they're supposed to ask their family for the maximum amount of support. . . . But what they don't understand is there is only so much charity that we're willing to ask [for]. Asking your neighbor to borrow a cup of sugar, that's okay. . . . But how far do you go? Neighbor, can you wash my car? [Another respondent adds:] Neighbor, I need a shower. (NS focus group participant)

That spouse or person, after they work, is like everybody else, wants to have supper, do the dishes, sit back and watch TV and relax, not become your evening attendant because your needs have been unmet all day. (NS focus group participant)

My husband does all of my evening and weekend care. Though home care has said they would provide this, we don't want it because it interferes with our privacy and would force me to go to bed far earlier than I want. We've asked home care if they would trade those hours for more daytime hours, but they've refused. Thus, my husband is expected to do all the dinners and after dinner cleanup, all the shopping and running of errands, and running me around to appointments, in addition to all the physical care he gives me. This makes me feel guilty and burdensome and it gives us less time (and him less energy) to do enjoyable things together. (NS interview participant)

When one relies on close ones, one tends not to request very specific things. When dealing with someone external who gets paid to do the job, there is less awkwardness and you feel more at ease asking for specific tasks to be done. (QC interview participant)

When my wife is home, at least the time I spend with her is quality time. She does not have to worry about looking after me all the time. She can rely on my support workers to do those things. It makes a huge difference. (ON interview participant)

These excerpts illustrate how over-reliance on informal care can have tremendous negative consequences upon consumers' most cherished and intimate relationships.

5.1.4 Assessment and eligibility recommendation:

Respect and accommodate life choices, goals and development

The assessment process does not recognize that an individual's health and living needs may fluctuate periodically, or may not materialize during the period of time the assessment is being conducted or the short period of time immediately preceding the assessment. The assessment process should not only provide for a person's immediate needs, but should also involve long-range planning that accommodates potential future health changes. For example, one interviewee from Nova Scotia commented, "My health is getting worse, there is no cure for what I have and every year it is a worry over whether I am going to lose my service or not."

Home support assessments must allow people to plan for the futureâ€"especially for those life changes or activities that are typical of human development, such as a young adult moving out of the parental home, marrying, and having children. When home support systems discourage such personal development they are in effect questioning people with disabilities' rights to make basic decisions for themselves. When asked to comment on how home support facilitates the accomplishment of life goals, one participant responded, "I've never got the impression that the home care workers care one bit about my life goals" (ON interview participant).

In years past, when pregnant with our first daughter, upon telling my coordinator that I was pregnant her response was "But, I thought we agreed that you and your husband were not going to have a baby! To which I replied that I was unaware she had a vote in the matter. (MB interview participant)

I was able to receive in-home support for 12 hours a day when I was single but when I got married I no longer qualified. This led to longer stays in hospital because the hours were not given. (NS interview participant)

I had to return to live with an overprotective mother because my needs were too great compared to available coverage. With more than 30 hours of assistance of all sorts, I was offered the choice to go in a CHSLD [long-term care facility]. (QC interview participant)

5.2 Regionalization and Portability

One of the most deleterious impacts of the CHST (Canada Health and Social Transfer) on the home support system has been the increased provincial control over health spending and the associated weakening of national standards for health services. The greater provincial control over health care since the CHST was implemented has resulted in increased variability in how health services are funded and delivered in provinces, territories and even health regions within each province and territory. Although the regionalization of health care was justified by the federal government to be more efficient by allowing provinces and territories more flexibility to tailor health services to the needs of their respective populations, in practice it has created bureaucratic confusion and reduced accountability in health care across Canada (Krogh & Johnson, in press; Krogh, Johnson, & Bowman, in preparation).

One of the major problems of regionalization for home support users is that it has made it easier for provincial/territorial and regional government officials to cut or restrict home support services offered within their jurisdictions. Since home support services are not listed under the Canada Health Act as insured services, they are easy targets for cuts by governments seeking to reduce expenditures while maintaining the quality of their insured services. Many home support services have been disproportionately cut or restricted across Canada to satisfy budgetary requirements, while the estimated need for these services has increased. In the Capital Health Region of British Columbia (now part of the Vancouver Island Health Authority), regional flexibility in the interpretation of what constituted medically necessary health services was exploited to reduce or eliminate coverage for some home support services such as meal preparation (Krogh & Johnson, in press). The rising demand for limited services has left many home support users to cope with less support than they require.

Regionalization has also contributed to disparities in home support service funding and delivery between health regions in the provinces and territories, and added to the variability in home support across the country. This variability in home support services from one area of the country to the next has undermined the portability of these services for people with disabilities. When home support users wish to move or travel from one area of the country to another, or even one area of a province or territory to another, the regional differences in home support policy and service often make reassessment necessary. There is no guarantee of maintaining levels of service. For example, in Newfoundland and Labrador, regions may use the provincial assessment tool or develop their own assessment tool (NL policy template summary). Similarly in Nunavut, "if people with disabilities move from one region to another within Nunavut they cannot be assured of maintaining their home support services. The same level of service is not guaranteed, but there is an attempt to maintain the same level. According to the Territorial Home and Community Care Coordinator for the Government of Nunavut, a lot depends on human resource availability" (NU policy template summary; G. Greeley, personal communication, 2004).

Given the recent history of cuts to services across the country, home support users fear that they will not be able to maintain an adequate level of home support funding in a new location. These fears are well grounded. As one home support user from Alberta argued,

People in close proximity may be part of different regions and receive different services. A lot of small towns around Red Deer are in different regions so they seem far apart. A person can't move or travel to another region and be guaranteed the same level of care. . . . There is no standard in the whole province. There is no consistency between regions. Each RHA sets its own policy, so you are at the mercy of each region. (AB focus group participant)

Another research participant from British Columbia concurred:

Home support services are not portable from region to region. Individuals who move outside of their home region can expect to be reassessed and risk losing home support hours. The interregional barriers are now high enough that individuals with "high care needs" are actively discouraged [by disability organizations] from moving. (BC policy template summary)

Although British Columbia policy states that within a province, a person who is eligible to receive home support may access this service in any health authority in the province, health regions are reluctant to take on "high cost" clients (BC policy template; Government of British Columbia, 2000; see also Krogh, 2001, for a case example of a man who became injured, resided in a rehabilitation center and was for a long period of time disallowed from returning to the health region where he had lived with his family because of the costs associated with home support).

The lack of portability of home support services and funding in Canada effectively restricts the ability of home support users to move or travel within the country, and this has been interpreted by consumer organizations such as the CCD as a contravention of mobility rights under section 6, subsection 2 of the Canadian Charter of Rights and Freedoms (Government of Canada, 1982) that protect every citizen's right to live anywhere in Canada. Home support users and advocates have identified the lack of portability and universality of these services across regions and provinces as a major obstacle to their independence and rights as citizens.

5.2.1 Regionalization and portability recommendation:

Maintain service levels among regions

Home support users must maintain the same level of funding and range of services. This is the only way that people with disabilities will feel they are able to move within or between provinces and territories.

I had some difficulties when I wanted to move from one region to another from a variety of service providers. (PE interview participant)

From what I understand of the home support system, the needs of the clients are not what drive the services offered, but rather the availability of resources. That means that, depending on which CLSC you are in, you might or might not obtain the services you need. You could get some services in one area, and other services elsewhere. In some areas, you might get direct allowance, in others social economy benefits might be the norm. (QC video participant)

Make sure that services are uniform from one health region to the next. (SK focus group participant)

5.2.2 Regionalization and portability recommendation:

Tie services to the user, not the home

Home support services should be tied to the person, not the home. This will facilitate home support users' freedom and ability to move or travel. Home support users are often unable to travel between regions because the provision of services is limited to their region of residence. Provisions should be made so that home support services can be accessed anywhere in the country. Building interregional communication is a necessary step, as well as the development of a national registry of qualified home support workers that can be accessed by consumers while traveling.

I would like to attend evening events and get a late tuck in, to travel to other provinces for business or pleasure and receive home care services in other provinces where I stay. (NS interview participant)

There is no guarantee that home support will be provided when a person is traveling unless they bring their own attendant (including when a person travels for employment purposes). Two study participants confirmed this situation in their comments:

If I go out of town, I go to a private agency because you can't rely on home care to provide care in other regions. (AB focus group participant)

A national database of home support workers, who are qualified, would enable people with disabilities to access assistance anywhere they want. (NS interview participant)

5.3 User Fees

Because home support is not considered to be an essential, insured health service under the Canada Health Act (1985), provinces and territories seeking to balance their budgets have resorted to user fees for many of these uninsured health services. User fees have been implemented in British Columbia, Saskatchewan, New Brunswick, Nova Scotia, Prince Edward Island, Newfoundland and Labrador. Québec does not charge for home care (including nursing care, rehabilitation, psychosocial services, medical services and specialized care), but does charge user fees for personal care, custodial care, domestic assistance, and respite support for families and relatives. Alberta does not charge direct fees for nursing, rehabilitation, personal care, or assessment, but does charge for home support, such as meal preparation and homemaking services. Manitoba, Ontario, Nunavut, the Northwest Territories, and the Yukon do not currently charge user fees (Canadian Home Care Association, 2003).

User fees impede access to health care, particularly for the poor (Romanow, 2002). The implementation of user fees for home support services causes problems for people with disabilities. While user fees offset the costs of delivering home support services, many people with disabilities are unable to afford the fees associated with services they require in order to remain healthy, independent and active citizens. Many people with disabilities are already on tight budgets that are stressed even further by the introduction of user fees for services. They fear that this financial stress will force them to make difficult choices that will negatively affect their lives. An Ontario research participant wrote, "This idea frightens me. Many of us who receive home care are living on tiny pensions and cannot afford to pay" (ON interview participant). Some home support users are forced to reduce or eliminate services such as bathing, housekeeping or meal preparation that are essential for maintaining their health and quality of life. One participant in Saskatchewan explained, "I can only receive a bath/shower twice a week because I cannot afford moreâ€"I would love to bathe almost every night" (SK interview participant). Over time, doing without these services can be expected to result in declining health and wellness for many. A Québec participant wrote, "I did not pursue the offer of basic assistance at that point because I could not afford the $10 per hour cost for the service given my income and other needs. I had requested three hours of assistance per week, but could not reconcile the cost with my budget" (QC interview participant). Another participant from Saskatchewan noted,

We are the only sector of society that has to pay to have a bath." There should be no user fees for basic needs no matter what level of income you have. We are not charged for nursing services or other medical problems, this should be classed the same with no charge. People with disabilities have no other option for having baths, or other personal care but to pay for it. Being clean is part of being healthy. (SK interview participant)

For home support users who cannot afford user fees, loss of independence is inevitable. For instance, several participants noted that since user fees were based on income, they presented a strong disincentive to securing paid employment (NS focus group participant), thus enforcing the equation of impairment with dependence. Even worse, a significant portion of people who need home support but can't afford it, or who have their hours cut, suffer health crises after service cuts, are relocated to institutions, or die (Hollander, 2001; Krogh, 2001). Because most user fees are income dependent, they decrease people with disabilities' chances of becoming more independent.

It was also felt that people with disabilities who have worked in the past are financially penalized for the benefits (like health care coverage) they received as a result of working. One focus group participant from Nova Scotia stated that he would recommend to young people with disabilities that they not work because services like home care are harder to access after having worked. He felt that the financial benefits you receive from working are held against you during your evaluation for fee payment. (NS focus group participant)

For people with disabilities, adequate home support is clearly and inextricably tied to enabling good health and wellness. As such, the implementation of user fees would, in some people's assessment, contradict the principle of universality in the Canada Health Act (CHA) (1985). Regarding universality of health care, one participant mentioned, "I feel that imposed user fees are against the HealthAct. We are supposed to have universal care for all" (NS interview participant). User fees send the message that quality basic health care is not an inalienable right of all Canadian citizens, rather, a privilege reserved for those who can afford it, and in this instance, reserved for those who do not experience long-term disability. People with impairments feel cheated because the health-related services that they rely on are not protected in comparison to other services that are included in the CHA that many able-bodied people access.

5.3.1 User fees recommendation:

Abolish user fees for home support services

User fees make home support services financially inaccessible and carry a number of serious, negative consequences for home support users. The simplest and most effective way to ameliorate the damaging effects of user fees on the lives of people with disabilities is to abolish them completely.

User fees are just wrong for people with disabilities. . . . The basic necessities of life such as food, telephone, clothing shouldn't have to compete for dollars with disability supports. These supports are also a basic necessity for the disabled individual. (SK interview participant)

My needs are always there, but I do not anticipate making a new request. I would like to get the services, but it would be difficult for me to pay the costs. (QC interview participant)

I don't like user fees because very few people can afford it. I think user fees shouldn't exist. . . . I don't like that people would not be able to get the services they need. (AB interview participant)

I dislike the fact that people on low income have to pay for home care visits. Paying for home care cuts into the income of low-income earners, preventing them from getting the basic needs for survival in this "ever growing economy." (NS interview participant)

Don't introduce user fees or if it is done, many disabled individuals would be forced to go to a nursing/care home. (MB interview participant)

5.4 Appeal Mechanism

According to many of the participants in this study, the assessment process for home support is often overly restrictive, disproportionately emphasizes biomedical functional impairments to the exclusion of chronic and less visible impairments (e.g., those associated with pain, fatigue, or mental health) and often does not provide an adequate level of support. Consumers involved in this research project feel strongly that an appeal process should be a mandatory element of eligibility assessments. Currently, however, there is much variability between provinces and territories regarding the nature of appeal procedures in home support systems across Canada. Some provinces such as Prince Edward Island do not even have an appeal mechanism in place since home support is not a legislated program there (PE policy template; M. Kennedy, personal communication, January 13, 2004). In British Columbia, although appeal procedures exist in principle, they are not always implemented in practice at the regional level (BC policy template summary). In the Yukon Territory, one consumer stated, "Service recipients have direct access to politicians, if they choose. There are no formal appeal mechanisms" (YT focus group participant). Even when appeal procedures are in place, they are sometimes informal or lack the power to effectively reverse decisions that are under appeal. One home support user from Nova Scotia reported, "I have had nothing but frustration with appeals. In my province, under the current government, once you get to a certain level, appeals are ignored" (NS interview participant).

Another significant problem with current appeal mechanisms is that there is a pervasive lack of confidentiality. While Alberta, British Columbia, Manitoba, Nova Scotia, Nunavut, Ontario, Québec, and Saskatchewan all have formal appeal mechanisms, Québec is the only province that stipulates specifically that appeals should be handled confidentially and independently from the service provider (QC policy template; Gouvernement du Québec, 2002 [English translation, p. 10]). The lack of confidentiality in most appeal mechanisms discourages home support users from filing an appeal for fear of retribution. One user from Québec stated, "I fear that a complaint or critical comment could backfire against me. I fear that asking for additional services will result in me no longer having the worker with whom I am very pleased" (QC interview participant). The threat of retribution from home support administrators appears well founded, as this consumer from Saskatchewan's comments illustrate:

There have been aides that have asked not to come back or I have requested that they don't come back, but this caused a huge problem last year when I was informed that home care could no longer provide my care and they would be giving me two months to arrange private care. I got the assistance of the Ombudsman and I was reinstated, but this has had lasting negative effects on my relationship with the people in the home care office. At one point two years ago I asked not to have an aide return because she was unable to follow directions (verbally or written). She came seven times and I asked to have her trained three of those seven times with no improvement. I was told that I had to have her or nothing. I chose nothing which means that I now must sit from 6:15 a.m. to 10:30 p.m. (SK interview participant)

The example once again illustrates the expectation that consumers should confine themselves in dependent and passive roles. When people with disabilities become active they may be forced into situations that place their health or safety at risk. Many home support users feel that the current appeal processes are intimidating and unfairly biased against consumers. Very few appeal committees involve representation from home support users or self-directed disability advocacy organizations, and as a result, many users feel that appeals are not impartial. Alberta is currently the only province with consumer representation on the appeal panel where at least two members of the board must represent home support users (AB policy template; Government of Alberta, 1995). This lack of impartiality is compounded by the fact that appeal procedures and regulations are not often made available and can be difficult for the public to understand. A consumer in Prince Edward Island believed the appeal process was skewed in favor of home support administrators. He stated, "You are not allowed to bring anyone who knows about the policies with you, only them. You are not allowed to see the policy in advance of the meeting" (PE interview participant). National standards could enforce the right to an independent appeal, confidentiality, and user representation in appeal mechanisms. The lack thereof undermines the effectiveness of appeal mechanisms in home support systems and weakens users' confidence in the government's ability to protect them from unfair treatment and abuse.

5.4.1 Appeal mechanism recommendation:

Appeal mechanisms should be legislated

An appeal mechanism is a necessary component of all publicly funded home support systems. The right to an appeal must be built into home support legislation, not left as an optional part of the policy. There should be two elements of the appeal mechanism: dispute resolution between home support workers and users; and appeal of decisions about eligibility, level or type of service, service delivery, changes in workers, etc.

Home support in British Columbia is still hamstrung by both its legislative and policy frameworks. The Continuing Care Act provides no entitlement to home support and no prescribed avenues of appeal for redress. Efforts to have the Continuing Care Act amended to provide these safeguards have failed. Without a strong legal rights framework, home support consumers are at the whim of policy, which is made in Victoria and administered haphazardly by the regions. Each region is supposed to implement an appeal procedure, but they have been slow to do so. (BC policy template summary)

An appeal process to bring forward specific concerns to a group or committee is essential. . . . It allows a recipient to appeal certain needs that require policy flexibility. (AB interview participant)

5.4.2 Appeal mechanism recommendation:

Appeal mechanisms should operate in good faith

In order to be effective, an appeal committee must have the ability to alter or reverse decisions made by home support administrators that the committee deems to be unfair or unhealthy to the user. The appeal committee should have the ability to ensure that its decisions are carried out and are binding.

I do not have the energy to fight with a bureaucratic machine that does not appear to have my best interests in mind. (AB interview participant)

The committee should be made up from persons independent from the administration, yet have a strong voice to bring about changes through the administrative level. (AB interview participant)

I followed all proper procedures [for an appeal] and took it to the Minister of Health and it really was of no use as their minds were made up. (NS interview participant)

5.4.3 Appeal mechanism recommendation:

Appeals should be independent, impartial and confidential

In terms of funding, administration, and reporting, the appeal committee must be impartial to ensure that appeals are conducted fairly. The appeal should be conducted by a committee that is separate from the body responsible for the decision under appeal. The appeal committee must have user, service provider, and where appropriate, worker representatives. Fear of retribution (loss of home support hours, negative implications for relationships with home support workers) can discourage users from appealing decisions that they feel are unfair or unhealthy. All aspects of the appeal must be kept strictly confidential in order to ensure that the appeal process remains a safe space for the expression of dissent.

All of the regional appeal procedures are in-house administrative reviews rather than bona fide independent appeals. (BC policy template summary)

An individual appeal board independent of home care itself . . . including a spokesperson from an advocacy group of program recipients to sit in on all administrative meetings, will [bring] about necessary changes to the advantage of all concerned. (AB interview participant)

5.4.4 Appeal mechanism recommendation:

Appeal procedures should be public and accessible

It is important that all users are provided with home support policy, procedural and service information in an accessible format. They must also be made aware of their right to appeal home support decisions. Information about the appeal process and users' rights and options in an appeal should be easily accessible and written in plain language. A series of steps (ideally only a couple) should be made public on paper, as well as on regional and provincial ministry of health websites. At the users' discretion, advocates should be allowed to assist the user in negotiating the appeal (NS focus group participant). Consumer-directed advocacy organizations could play a role in working with individuals to prepare for appeals.

I did not think of contesting the refusal of services. It would have required a lot of time and energy. And one needs to know how and where to do it, to know the procedure . . . etc. (QC interview participant)

There needs to be a decent, non-threatening appeal process which would include consultation with the person who made the referral to home care. (PE focus group participant)

[People with disabilities living in rural areas] can't find anybody to complain to who will, who can actually do anything about it. There's no direct link to the government or to someone who holds these [parties] responsible . . . there's no mechanism for conflict resolution or anything. . . . There should be someone you can contact directly within the government to complain to and make them accountable for the services. (First Nations interview participant)

5.4.5 Appeal mechanism recommendation:

Facilitate collaboration or negotiate compromise

The goal of the appeal committee should be to understand the context in which the appeal was initiated and hear the perspective of the appellant and the service provider. In addition, it should facilitate collaboration, in which all parties would find an acceptable solution, or negotiate a compromise, in which both parties would make concessions to reach an agreed-upon outcome. Appointing a mediator should be an option.

The appeals process should allow for meetings with the client at every level, rather than just reading a piece of paper or listening to a report from a case worker. (NS interview participant)

My health is at risk because a decision has been made and I am unable to negotiate a change that I need. . . . Supervisors must look at negotiating with the client instead of making decisions that impact so devastatingly on people's lives. When given an ultimatum between two unacceptable options I feel the supervisors are being high-handed and displaying a poor use of power. (SK interview participant)

I would like to see a mediator be appointed who is not connected with home care in any way who is skilled to negotiate a compromise that is satisfactory to both parties. Also, supervisors could come out with an aide who is having difficulty and settle things before they get out of hand. (SK interview participant)

5.5 Staff Training and Administration

The qualifications and training of home support workers varies across the country since there is currently no national standard of professional accreditation for home support workers. A Québec research participant thought that "the training of home support service workers is too vague. Too many schools offer this service. Furthermore, some offer it in three weeks while others offer it over the course of a year" (QC interview participant). Similarly, a Yukon consumer stated, "[although] a program at the college is training students in home care, there are no training standards in the Yukon" (YT focus group participant). Whereas some home support workers are well trained, home support users feel that many more are relatively unskilled and inadequately trained to perform home support services. Some users feel that the low wages offered for most home support work acts as a disincentive for skilled individuals to do this work. A consumer from Manitoba explained the effect low wages has on the quality of home support service:

I often feel that because my care attendants are paid very little for some of the things that they must do, they do not consider their job to be very important. Therefore, I think that we must raise the standard of training, pay and respect and that training must be standardized across the country. (MB interview participant)

Private home support agencies in particular, it was felt, have contributed to the deskilling of home support work, since they tend to offer lower wages and hire employees who lack formal home support training compared with public agencies.

The lack of minimum training standards for home support work becomes particularly problematic when workers do not have the necessary training to ensure their own health and safety as well as the safety of the consumers they support. Not having sufficient language skills, basic training in first aid, fitness, or an understanding of basic care techniques such as heavy lifting and transferring can result in dangerous situations for the home support worker, the consumer, or both, as this consumer from the Northwest Territories explained:

For cleaning, even to be a regular housekeeper to wash a floor in a hospital, you have to have training. You go for this little course and they teach you to make sure bacteria isn't going to grow here and they test that. . . . That's what these home workers should do. Have an idea of how bacteria grows, stuff like that, and also have training about medical [procedures]. Say if someone is choking when you're dressing them, you've got to know what to do. (NT focus group participant)

In addition, home support workers do not always have training in specific procedures or techniques that the client requires to remain healthy and safe, as explained by a consumer from Alberta:

It is important that the workers know what needs to be done when they are sent to a client's home. If the worker has never done a certain procedure (change catheter bag) it's a little uneasy wondering if they will understand when you explain to them how to do it and how to clean up after. (AB interview participant)

The lack of training standards for home support workers is compounded by the fact that many home support agencies do not initiate background checks for new workers. Failure to screen potential home support workers before they enter consumers' private homes leaves people with disabilities vulnerable to theft, neglect and abuse by home support workers. Incidents of past abuse by home support workers were well documented among research participants. For instance, an Alberta research participant described one worker that "had aggressive rages in yelling and crying at me because of her personal problems" (AB interview participant). Another participant related how a home support worker had become controlling and abusive:

I have what they call diabetic neuropathy. And I had one woman who came in and snatched a pillow from under my foot that I rest my foot on because I can't put it on the floor and I ended up trying to reason with her and she said, "I don't like pillows on the floor." And I said to her, "It's not your floor," and I put the pillow back down and she reached back to grab it again and I gave her a push and she landed on her butt. So I phoned the office and I told them I don't want her there. . . . I ended up having to move my wheelchair and push it against her and push her out the door, physically. She would not leave. (First Nations interview participant)

One consumer in the Yukon had difficulties with theft, and described how hiring practices affected her sense of security and personal safety:

A couple of times my money has been stolen, my wallet has been there. That's the only thing I don't like about hiring, because it's a hit and miss who you might get. And both of them that stole, I thought, doesn't anybody . . . do a police check? (YT focus group participant)

The lack of formal screening procedures and background checks increases the likelihood of incidents of intimidation, theft and abuse, which can be dangerous for the physical and emotional well being of people with disabilities who rely on home support. As described by consumers, this situation can be compounded by the lack of formal documentation of complaints, the absence of action taken to address concerns, or perhaps worst of all, the retribution/punishment consumers face from individual workers or agency staff after putting forward a complaintâ€"these circumstances essentially allow the abuse to continue.

Furthermore, formally trained workers are sometimes unwilling to adapt their training to suit the specific needs of their clients. As a participant from Newfoundland wrote:

Some workers who have training think they "know it all" and therefore do not listen to the particular procedure being shown to them. When they are put in the position to demonstrate their knowledge, they fail because they weren't listening. Having prior training in a particular skill (suctioning) is fine if the worker is able to alter their skill when asked to repeat it based on the personal preference of another recipient who requires that same skill performed differently. (NL interview participant)

This inflexibility in the administration of care can lead to declining health, and loss of control and independence for people with disabilities.

Even when home support workers do have formal home/personal support training, a degree of consumer-specific training must still occur so that workers will be able to attend to the specific needs of the consumers they support. Consumers are generally expected to do this home support worker training during their allocated service hours, without compensation. The need to provide consumer-specific training for home support workers becomes especially problematic given the high staff turnover, particularly from private home support agencies. Each new worker must be trained by the client, which detracts from a client’s home support hours and the quality of service during the training period. A Québec research participant related that in one year he had some 250 different attendants. He said, "I don't know if you realize what that encompasses, but each time there is a new home support worker, you have to train that person. It's very complex and time-consuming" (QC focus group participant). Another research participant from Saskatchewan wrote about a woman she knew "that had over 100 different aides come into her home in a year, and each one saw her nakedâ€"how would the office personnel like to be naked for over 100 women/men over a year?" (SK interview participant). The constant stream of new workers assigned to home support users is not only time consuming, it is degrading and threatening for people with disabilities to continually put themselves in vulnerable situations with strangers (see Sobsey & Doe, 1991, and Twig, 2000, for a further discussion of these issues).

5.5.1 Staff training and administration recommendation:

Government should oversee home support worker training and standards

The qualifications and training of home support workers vary considerably between provinces and territories, and even between health regions within a province or territory. Home support work is currently underpaid and without benefits, particularly when administered by a private agency. These factors compromise the quality of health care people with disabilities receive. Many of the consumers involved in this research project want to see provincial and territorial standards in home support worker training. This training should lead to professional standards for home support workers. Standardized qualifications and professional affiliation should increase the value of home support work and, in turn, the quality of support people with disabilities receive.

Increase training requirements and improve service standards. . . . Develop clear standards for staff with respect to what they are expected to do and when, etc. Increase accountability with staff and supervisors. Develop more clear and practical guidelines for staff. (YT focus group participant)

Home care providers should be required to obtain a license providing they meet certain criteria established by the government. (SK interview participant)

Home care workers need to be trained at a government institution, not a privately owned college. In my eyes, workers do not receive sufficient training. (NS interview participant)

It would be good if there was an area where there was an attendant registry and you would be able to go there and these people had been trained. (NS video participant)

5.5.2 Staff training and administration recommendation:

Involve and remunerate consumers in worker training

Home support recipients are experiential experts in home support staff training. Recipients would benefit from collaboration in the design of worker training programs and the development of training standards. Home support recipients should be given the opportunity to collaborate with instructors, offer feedback on specific techniques and provide training in the philosophy of Independent Living, disability rights, and the ways home support workers can facilitate self- determination. Representatives from consumer-directed disability organizations could also be consulted. Contributions to staff training (both formal and informal) deserve both recognition and compensation.

Poor quality home support is illustrated when a home support worker blatantly disregards an instruction and decides they know better than I do about my care and proceeds to do something differently than I asked. This is disrespectful and causes me great frustration, sometimes it causes medical problems. For instance, if a red spot appears on my bottom and the worker wants to put cream on itâ€"I refuse. I know from experience that putting cream on a red area on my body will make the area break down faster than if it were left alone. (NL interview participant)

Maybe some consumers should be paid an honorarium to "teach" workers (in classrooms) about different [aspects] of their own disability or "challenge." This not only gives the consumer "a job," it gives them control of their situations. If student training is done in the home, consumers can be compensated with a credit which could be made to their next month's bill. (SK interview participant)

I find it important to consider the number of agencies that recruit less-than-adequately trained workers. . . . The person that is sent does not know ahead of time what he or she must do (meal preparation, housecleaning, etc.), so I must explain everything. . . . The woman from the agency does not know what to do and how to do it. I must explain everything from A to Z and start again the following week when someone else is sent. (QC interview participant)

5.5.3 Staff training and administration recommendation:

Training should include an Independent Living focus

Many consumers feel it is imperative that home support workers receive training in principles of Independent Living and consumer control. Home support worker training covers technical skills required for personal care, however home support work encompasses much more than just personal care. It is critical that home support worker training be based on an Independent Living model, not an institutional or medical model, as home support is tied to citizenship as well as health.

[Licensed Practical Nurses (LPNs)] often have an institutional approach and don't understand community living. LPNs don't always understand that it is the person receiving the care that is supposed to be making the decisions about their care. (AB focus group participant)

You have to remember these skills are being performed in a person's private home setting and not an institution. (NL interview participant)

The attitude of caregivers coming out of the training courses are facility based, not home care based, [and] thus have a medical model, not a community-based model attitude. (AB interview participant)

Initial talks are underway with the Independent Living Resource Centre about a training program which would include consumers in the training. (MB policy template summary)

The training content guidelines for a New Brunswick program illustrate a framework in which Independent Living principles could easily be incorporated.

[The Home Care Worker training program provided by New Brunswick Community College includes] at least 210 hours of instruction in the areas of communications and interpersonal relationships, philosophy of home support services, basic generic training to develop skills and understanding in promoting independence, respect for clients' rights, home management, personal care, healthy living, safety in the home, and first aid procedures. (NB policy template summary)

5.5.4 Staff training and administration recommendation:

Training should include a consumer-specific orientation

Home support users have unique needs that relate to their disability or lifestyle and must provide user-specific training for their home support workers. As one participant from Saskatchewan stated, "They should be trained with the individual in mind. What I do as a quadriplegic is different than what another quadriplegic would do." Most often, recipients of home support are expected to take time out of their allocated home support service hours to train their attendants. Consumert-specific orientation should be part of home support worker training, and should not come out of recipients' allocated service hours.

[Training] could be improved if all workers were required to go out on a training run with another worker to see a specific client so they can learn different procedures. (AB interview participant)

The home support worker should be trained specifically for the client involved. . . . I think before hiring a worker somebody should take the time to train that worker so that he or she fully understands their duties and what the position involves. (NL interview participant)

come on, lift your leg or stand up." Many people don't understand that fatigue is often part of our life. . . . Everything I try to do is a big challenge and takes a lot of my strength, physically, mentally, emotionally. (AB interview participant)

When the head office sends me [an] untrained service worker who they have not trained to use the Hoyer lift [and] when I fall off the Hoyer lift at the time when the Hoyer lift is being used by a trained work[er] and the head office takes no responsibility. . . . Sometimes workers are sent to work without providing them with enough training or orientation of the individual's care needed. (MB interview participant)

5.5.5 Staff training and administration recommendation:

Ensure standards in first aid, fitness and effective communication

There are certain fundamental qualifications that all home support workers in Canada should possess to ensure high quality home support services. Home support workers should have first aid training in order to proficiently handle emergency situations involving the person they support. Home support workers should meet a minimum standard for fitness to ensure that they are capable of performing the sometimes physically demanding aspects of care. There should also be a minimum standard for verbal and/or written comprehension of either English or French to ensure workers are able to effectively communicate with the people they support. The particular communication needs of immigrants whose first language is neither English nor French must be accommodated, as well as the needs of those who have communication difficulties as a result of their disability, e.g., persons who are deaf. Finally, home support workers should be required to undertake a periodic review that ensures minimal qualifications in these areas are maintained.

There are many people [employed as home support workers in Canada who have come] from other countries who have difficulty with the language. Basic comprehension tests (e.g., parts of the body) should be a standard. (AB focus group participant)

I [do] feel that included in their training is a physical fitness requirement, so that these prospective workers will be in good physical condition to be able to handle the jobs they are about to take on. (MB interview participant)

[There should be] a set standard where workers have to go through a semiannual review to see if they are suffering from burnout or whatever and to make sure they are still doing their job properly and with a sense of humanity. (AB interview participant)

5.5.6 Staff training and administration recommendation:

Conduct background checks

Home support workers often enter into the lives of home support recipients at times when they are most vulnerable, e.g., needing assistance with undressing, bathing or transferring to bed. Positive and respectful relationships between home support workers and recipients can facilitate independence and community participation, and help to maintain health and family relationships. However, because home support is delivered on a one-to-one basis and can take place outside of regulated environments like institutions, home support recipients are incredibly vulnerable. Admission to home support training programs must involve a mandatory background check to help prevent abuse. A method of documenting neglect or abuse should be implemented, and consumers and institutions should have easy access to this information. Home support worker training should extend beyond accreditation. As one participant from Alberta put it, "These workers can have a lot of influence in persons with disabilities' lives and this responsibility needs to be taken very seriously."

I was financially taken advantage of because the staff supervision did not bother to check references. This gave the new staff person free reign to steal from tenants after she placed them in the bath or bed for the night. (MB interview participant)

There should be some standards developed so that not anyone could claim to be a home care provider. . . . People with disabilities have enough problems. They shouldn't have to scrutinize individuals for honesty and integrity, etc. (SK interview participant)

Many people who receive home care are elderly and would not complain or phone a supervisor and the care that they receive concerns me greatly. Also I question the quality control of aides as it seems like anyone with a certificate is hired and they all pass their probation despite what other aides say about their work. In the nine years that I have had home care I have only heard of one or two people actually getting fired. (SK interview participant)

One participant from the study described a particular interaction which illustrates the vulnerable position that people with disabilities can find themselves in while receiving home support.

I once had a worker who seemed to have a chip on her shoulder, and was lazy. She also didn't understand my disability and didn't know that I have no feeling or control of most of my body. Once, after I was in bed and she had started to undress me, she noticed that my leg bag had leaked on the sheet. She accused me of having left the latch open, when, in fact, she'd probably accidentally opened it when she removed my pants. But her attitude was simply to accuse. Then she said quite huffily, "Now I guess you want me to change your sheets!" I told her she could just put a towel on the wet spot. Then she turned me on my side and my leg fell back. She said, "Thanks a lot!" She revealed that she thought I'd moved it back on purpose, and when I told her I had no control or feeling in my legs, she said, "You mean I could burn you and you wouldn't even know it?" I'm sure many have had far worse experiences than this, but [this] woman frightened me. (name of province withheld)

5.5.7 Staff training and administration recommendation:

Regulate and minimize staff turnover

Participants of the study cited many examples of how frequent staff turnover undermined the quality of their home support. Staff consistency is required to establish the necessary level of trust within the support relationship for sensitive needs to be met fully and respectfully. Staff turnover should be regulated, with a standard set for the maximum number of care providers a home support recipient will receive within a given time period.

Well the first thing that's important to me is having a regular homemaker that I can get along with. (First Nations interview participant)

On the days I have home care, I get myself ready for my bowel movement usually at 5:30 a.m. and it takes about two hours. If they are late on these two days, I have extreme physical pain, and because I have an extreme case of dysflexia this causes great stress for me mentally. Also home care tends to send new women all the time without telling me. This puts both the new home aide and myself in a uncomfortable position since I do not know what is happening and they don't [either]. (SK interview participant)

I would think that if people [consumers] weren't getting consistent people to assist in the daily living needs. If it was like a revolving door of people coming in and out of your house to provide services, that would be quite stressful and there would be a lot of anxiety related to that. The service that you do get is of a personal nature, and some people are more comfortable than others. . . . There's also a trust element to having people come in and out of your home, because they are witnessing personal things that go on in your home. . . . The fact that you have a consistent group of people working for you day in and day out, to me that makes a big difference. They can get used to your routines. You just can develop a better working relationship with someone that you trust and that comes into your life on a regular basis. (ON interview participant)

It has not always been easy to find and keep good attendants! Just when you think you had some good ones, the head office would transfer them out, and I would have to start all over again, and this was very stressful at times! (MB interview participant)

5.5.8 Staff training and administration recommendation:

Appropriate back-up support must be available

Home support recipients cannot be expected to rely on family, friends, or volunteers for backup if their scheduled home support worker cannot work. A standard for trained backup support workers must be in place as a safety measure for home support recipients.

Home care is vitally important to my getting to work on time and in a presentable condition. If a home health aide is late then I, in turn, am late for work. Because I get up at 6:15 and the office doesn't open until 6:30, a replacement is extremely hard to find on such short notice if my regular aide is sick. (SK interview participant)

I have always had home care arrive at my home usually about 8:00 a.m.â€"in this way I can usually (if everything works like clockwork) be on my way to work or meetings by 9:30 a.m. If home care arrives later than 8:00 a.m. then I am in jeopardy of being late for my bus and sometimes they can wait, most times they cannot. This causes my work place or meeting times a problem. I hate to get to work or to a meeting late. (SK interview participant)

And there's no service on holidays you know, stat holidays. Because when I first registered they tried to give me daily service. Well I'm very independent. I don't need or want daily service. And I told them to give daily service to somebody that needs it. . . . But by doing that I put myself into the position where, seeing as I don't need daily service, I don't get [service on] stat holidays. (First Nations interview participant)

There is no funding for backup/emergency workers. Home care does not provide people on call. Family members should not be expected to be home support workers or be expected to fill in for home support workers. (AB focus group participant)

There are occasions even to this day, that I have to arrange privately with my home care [staff] to come in sometimes on their own time to look after my needs in order to get me ready for a "social event" that I have to be at early in the morning. If I were to go through the office staff for this, I am told that this is the duty of either my husband or my backups, and interestingly herein lies the problem. . . . I have no backups! (MB interview participant)

5.6 Direct Funding

As an alternative to providing home support users a limited range of services for a set number of service hours per day, week, or month, in the home location exclusively, direct funding programs (sometimes called self-managed care) provide direct payments to people with disabilities who are then free to apply these funds to manage their home support according to their own needs and desires. Because the funds are supplied directly to home support users, they are able to choose their workers, train workers according to their individual needs and have greater flexibility in the range of services they require and their location. They also allow the consumer greater flexibility over the scheduling and distribution of their service hours within a given time frame. Consumers involved in this research project expressed their appreciation of the flexibility, choice, and consumer control that direct funding programs offer:

Due to the fact that I am a community-based self-manager, my care needs can and are being met in a more flexible manner than the traditional community-based home care delivery system. I am very thankful for this because it allows me that freedom to spend quality time with my children. (MB interview participant)

In my home, I have full responsibility to run things smoothly with full communication and interaction with attendants. While it is the highest level of flexibility, choice, and control possible, it is a struggle [at] times to keep everyone happy. But really when there is respect for one another, cooperation on both sides comes easy. I take no one and nothing for granted. The flexibility I want, the choices I make and the control I enforce is all with full agreement and discussion with my attendants. It is a partnership that works both ways. (NL interview participant)

If they give you $100 a month and you only spend half of that on home care but spend the other half on a special piece of equipment that makes your life easier, you don't have to fill out forms, explain it to people, get a doctor's note. I think that not only makes you feel like you have more control, you do have more control and you know what's more suited to what you need. (YT focus group participant)

Direct funding programs also promote more accountability of workers to their clients since the client has direct control over the funds and can choose to replace problematic workers. Direct funding programs also foster independence and community participation since they allow consumers to use home support services outside the home.

Home support in British Columbia is increasingly confined to the home. Individuals who use direct funding through the Choices in Supports for Independent Living (CSIL) program have more flexibility and their personal attendants may accompany them to a range of activities outside of the home. (BC policy template summary)

However, with the exception of Newfoundland and Labrador, direct funding programs are relatively new in Canada and are generally not sufficiently funded to support large numbers of consumers. For instance, funding restrictions have made direct funding programs largely inaccessible to new consumers in British Columbia and Ontario. A direct funding pilot project initiated in Nova Scotia in 1994 has yet to expand beyond nine consumers (BC, ON, NS policy templates). In Alberta, at the time of this research, four of nine health regions had waiting lists for their self-managed care program (M. Styner, Canadian Paraplegic Association, personal communication, December 30th, 2003). Since 2001 the Ontario direct funding program has only accepted new users when an existing user leaves the program whereas in British Columbia, regions limit the number of new users so as not to exceed regional health budgets, regardless of provincial policies. Currently, the Northwest Territories, Nunavut, and Prince Edward Island do not have direct funding programs. As with other home support programs, the amount of funding one receives from direct funding programs is often related to family income, or subject to funding restrictions and caps. As such, some consumers in direct funding programs find that although they have more flexibility in home support service delivery, they still lack sufficient funding to fulfill their needs.

Despite the fact that many people with disabilities enjoy the flexibility that direct funding programs offer, they are often not available to people living in rural areas since the program stipulates that clients must hire home support workers within their area. This barrier to direct funding programs could be alleviated in some cases by allowing consumers to hire family members to provide home support services. However, consumers may currently only hire family members in Manitoba, Saskatchewan, the Yukon Territory, and most recently in British Columbia. A June 28, 2004 decision by the British Columbia Human Rights Tribunal upheld the complaint by Cheryl and Phillip Hutchinson that the Ministry of Health's policy was discriminatory in prohibiting the hiring of direct family members through the Choice in Supports for Independent Living (CSIL) program (BC Coalition of People with Disabilities, 2004). Many people with disabilities feel that disallowing consumers from hiring family members is a discriminatory practice that makes little practical sense.

Consumers with chronic impairments, and those who require periodic hospitalization or travel occasionally have also expressed concerns about retaining their workers during their absences. Currently, while direct funding employers are away, their home support workers are without work or compensation, often requiring workers to find work elsewhere. The low wages, lack of employee benefits, insurance or compensation for workers during periods of chronic unemployment creates a disincentive for workers in this field to commit to exclusive employment with a particular individual.

Another major barrier to direct funding programs is the lack of information about their availability in some areas and the absence of training or orientation (in accounting or employee administration, for instance) for consumers who would like to participate in such programs. In some cases, home support administrators and assessors are unaware of the existence of direct funding programs in their area or only inform a small number of consumers that meet strict eligibility requirements of such programs. In other cases, consumers are aware of the existence of direct funding programs, but are intimidated by the process of becoming a direct funding employer and the associated amount of time spent performing administrative tasks. As one participant wrote, "I like the individualized funding idea, but, since I have memory problems and some difficulty managing money, I think it would be too stressful for me. The hiring process, staff scheduling, etc. sounds stressful and difficult" (ON interview participant). Disability organizations such as Independent Living centres have provided some support to individuals regarding employer training and employee administration. The abovementioned barriers need to be overcome before direct funding programs can become more accessible to a larger proportion of home support users.

5.6.1 Direct funding recommendation:

Make direct funding programs universally available

Direct funding programs ought to be available as an option in all regions of Canada. It should be up to recipients to evaluate whether or not a direct funding program would work for them. Direct funding programs should be adequately funded so that home support recipients do not have to wait years before being considered for these programs. Ideally consumers want to see direct funds covering all disability-related needs of the individual receiving direct funding.

Currently, a few people in my province have self-directed care and the rest of us are being denied it because the government is not prepared to extend it. This is discriminatory. (NS interview participant)

Funding for home support programs in Ontario should be dramatically increased to eliminate waiting lists, to restore services levels, and to allow for the expansion of the direct funding program. (ON focus group participant)

There is not enough direct funding for people with disabilities. . . . I think government needs to be lobbied to support and provide funding for direct funding for people with disabilities. (PE interview participant)

We did have to work for quite a few years to get [direct funding] up and running but now we've proven it a great program and a lot of people have it, more people again down South are members of the program than down here in the North, but the ones that are on it just love it. (ON video participant)

5.6.2 Direct funding recommendation:

Direct funding should be flexible and consumer controlled

Direct funding programs need to be flexible. Direct funding recipients should have discretion over who is hired, how the funds are used, the kinds of support required, and scheduling of the support. At the discretion of the recipient, direct funding should enable family members to be hired as workers in situations where this makes sense (i.e., in rural/remote areas or in situations where language and culture are considerations). Consumers spoke of how this form of support has enabled them to feel in control of their own lives.

We need flexibility to hire people WHEN we want them and for the SERVICES we want. Self-directed options give clients control over their own lives, rather than treating them as childlike wards of the state. Furthermore, the provinces aren't willing to provide certain services for clients, but self-direction would allow clients to find those services themselves. (NS interview participant, emphasis added by participant)

Once you're approved for the program, you're guaranteed a specific number of hours per week and they leave it up to you to manage that. One day I might have somebody in my home for two hours, but the next day because of the way I've scheduled things, I might have them in my home for six hours. There's a great deal of flexibility. I found the direct funding, as long as you can account for the money and the time that you're using, they basically leave you aloneâ€"and that's the way you want it. (ON interview participant)

Direct funding is important because it gives me freedom and flexibility during my day. I feel competent enough to interview, hire, and fire when necessary. The choices I make are to improve/maintain my level of independence. . . . I like having control over my life and being the decision maker in my own home. (NL interview participant)

In some instances, direct funding consumers should be able to employ family members as personal support workers. For example when there is difficulty finding suitable workers in remote areas, or because of language or cultural barriers. (ON focus group participant)

5.6.3 Direct funding recommendation:

Program should accommodate exceptional circumstances for both recipients and workers. For example, workers should receive some level of compensation during temporary and unanticipated layoff periods when the home support recipient is in the hospital or traveling. Alternately, there may be times when a consumer needs to hire a support worker for assistance while traveling (for health appointments, work, vacation, etc.) or during a hospital stay to receive one-to-one care not available from institutional staff. Direct funding home support users also require backup support during home support worker absences. However, this backup should not be based exclusively on family, friends, or community volunteers.

Workers are not paid when you are in the hospital. This can be a serious problem for losing employees. (AB focus group participant)

I am allocated a specific amount of funding each month to pay my employees for my personal care. These funds do not allow me to take an attendant with me to go see my family or to take a small holiday of any sort . . . I now stay home much more than I used to. (AB interview participant)

A safety net must be provided for those who are self-directed, with backup support when needed. (AB interview participant)

5.6.4 Direct funding recommendation:

Educate direct funding consumers and home support assessors

Direct funding programs should provide support programs and materials to help users develop the skills necessary to be successful employers and self-managers. This could include employer training in dispute resolution, hiring and firing, bookkeeping, accounting and administration. At the same time, home support eligibility assessors should be educated about the Independent Living philosophy and the benefits that some home support users enjoy as a result of direct fundingâ€"greater control, flexibility, independence, and increased quality of life.

I researched direct funding a little bit and feel that the home care assessor does not know enough about it to lend the support that people need to be successful. (SK interview participant)

Make sure there is enough education to allow all to be fully aware of the process. (SK focus group participant)

In situations where the department gives money to the client or family to hire their own workers directly, there is legal confusion as to when this arrangement constitutes an employer/employee relationship. Clients are not informed about issues related to liability for income tax, CPP [Canada Pension Plan], workers' compensation, employment insurance, etc. (NB policy template summary)

5.6.5 Direct funding recommendation:

Fund benefits, insurance and vacation pay separately from service

hours

Direct funding should account for and include costs for employee benefits, insurance and vacation payâ€"funds for these costs should be granted in addition to the monies provided for home support service. Direct funding programs should aim to pay home support workers on a similar payscale to that of institutional settings. Family income, where applicable, should not affect assessments for direct funding.

Self-managed care clients act as employers and may be required by labor legislation to pay certain benefits. Additional benefits could be paid to employees although it is unlikely that a self-managed care client would be given enough funds to provide this provision to employees. (AB policy template summary)

Individuals should be funded up to the cost of caring for the individual in an institution. (ON focus group participant)

Self-managed care requires a lot of work. I don't want to deal with workers. I want to get up and going with my life. Under self-management, housekeeping and personal care is paid for, but the person takes care of the books (e.g., T4 slips, paying receiver general). I have to pay $135 to get my payroll updates. It does cost money because I have to do all of the administration. (AB focus group participant)

5.7 Unionization

Home support users recognize that unionization might ameliorate some of the current problems with home support such as privatization of home support services and poor working conditions for home support workers (e.g., low pay, no benefits, no compensation for mileage, limited job security). "It is common that there are not enough home care workers and/or that they are overworked. In any case, they do not seem to be paid adequately" (PE focus group participant). A consumer from the Yukon described her home support worker's difficult working conditions:

My adult care worker has to come by bus so she has to pay $2 a trip. Half of her $8 is already spoken for. The way the bus service is now she leaves at 9:00 from her house and arrives at my house before noon and she leaves my house at 3:00 and gets to her house at 5:00, and she has a 45-minute wait. I understand why she doesn't want to wait outside. (YT focus group participant)

Many consumers commented that unionization might help to increase the social value of home support work, which they posited would lead to better working conditions for workers, increased wages, and a higher quality of support for consumers. Many study participants noted the possible benefits that could follow from unionization.

All home support workers need full benefits, LTD [long-term disability] and extended health benefits. I know of people who struggle to work as home support workers because of previous injury and illness acquired in the course of caring for others. Then in some cases they end up worse off than those they care for. (NS interview participant)

The good part of the union is you've got your better wages, you've got your compensation comes into it, you've got people controlling what kind of work you've got to do, it's got things like the management can't come in and jog you to do something else and make you do five or six things all at one time. (NL video participant)

However, consumers also put forth a number of risks that they believed unionization of home support workers represents to the consumer health movement. Worker rights that evolved in institutions are inappropriate for the home setting. If generalized rules are brought into place many consumers worry their flexibility, control, quality of care, and quality of life will decrease. Consumers worry that an institutional approach to home support work promoted by unionization will turn their homes into institutions, removing opportunities for flexibility and choice that many home support users cherish. Home support users anticipate conflict over what services an employee can provide. Generalized workplace safety rules might supersede individual needs and decrease quality of care. Seniority clauses might take precedence over relationships built between consumers and their home support workers. A focus group participant from Newfoundland expressed reservations about unions:

It wasn't exactly the fear of unions as much as the knowledge that they come from [an] institutional background of negotiating on behalf of employees in large workplaces. There is no history, experience or knowledge base for the difference of working within a home environment. There is also so much ableism and stigma about disability and it is bound to impact negotiations and arbitration to the detriment of the consumer. (NL focus group participant)

Another major concern of consumers regarding unionization is the possibility of strikes by workers. If home support staff were to strike, what would happen to the people who rely on home support service to help them throughout the day?

Who's going to come in and get me out of bed? Who's gonna be able to take me to the bathroom? Nobody, because they're on a wildcat strike, and that's a big fear. . . . That's a really scary feeling to know that I could be left in the bed and with my breathing problems, I could be choking and the strike's called and nobody can do nothing. (NL video participant)

Home support users articulated concerns that the union philosophy of "power in numbers" would shift control away from the individual home support user and pit consumer rights against worker rights. In negotiations between home support users and workers, people with disabilities are vulnerable to discrimination stemming from negative or limiting attitudes about disability. If the government negotiates on behalf of home support users, there is a risk of further erosion of consumer control.

Consumers also worry that the institution-based model of unions would erode their flexibility, control, and quality of life. Campbell, Copeland and Tate (1999) described how home support practices that were based on rigid standards, seniority rules, and job definitions could transform homes into institutions. The following quotes illustrate many consumers' concerns about unionization:

I feel very scared now that my own home is going to be [unionized]. It's going to take my home and make it a workplace, not a place for safety where I can feel my home is safe. . . . I like to be a part of [meal] preparation and if that home care worker says I don't need you in the kitchen, I know how to do this, and make me feel it's not my home any more, it's a workplace. Where do I leave to get away from feeling that this is a workplace when this is my home? I can't go anywhere, and my safe place will be gone. (NL video participant)

I would feel like that [unionized] person would come in and would no longer listen to me because they're already coming in as a union person with their duties listed and as to what they've got to do. . . . I won't have no say in how my care was done. And I'd feel threatened in my own home and if one person left and I feel I don't have the right no more to do the interviews and choose who I want to hire, that [a new worker] will be forced on me because of seniority and how many years they've got work in the field. That person will be sent to my home with no consideration of what my needs are. (NL video participant)

5.7.1 Unionization recommendation:

Create conflict resolution committees

As long as home support remains undervalued by society, consumers of the service are aware that they will experience the consequences in both diminished health and quality of life. Some of the participants in this study described a new model developed to bring the benefits of unionization to home and community-based home support workers without sacrificing home support users' self-determination rights. "Power in numbers" must not be allowed to overwhelm the power, control, and right of home support users to articulate what kind of care they want, when, and how, in their homes and communities. For home support users with direct funding, the idea of creating a nonprofit association of self-managers with worker representatives that is mandated to speak on behalf of self-managers and negotiate for wages and benefits for their home support workers, was offered as a possible alternative to unionization (NL focus group participant).

The above concerns could be addressed by creating a conflict resolution committee with worker and consumer representatives. It would operate under a mandate to improve working conditions while also protecting the central tenets of home support: it must be a consumer-directed service, and workers must respect the personal nature of spaces in which home support is provided.

5.8 Privatization

Another side effect of the emphasis on economic efficiency that has influenced health policy since the 1990s is the increase in private investment in Canadian health care. Since 1985, private investment in health care has risen from 24 percent to 29 percent in 2000 (M. Morris, 2001). The only provinces and territories that currently deliver all home support services through the public sector are Québec, Prince Edward Island, Nunavut, Northwest Territories, and the Yukon (Canadian Home Care Association, 2003). A major assumption of privatization advocates is that the state is an inherently inefficient health provider and that the private sector is better equipped to offer health services in a more cost-effective manner. However, according to Burke, the private sector version of "efficiency" may in fact lead to "compromised care for more money, as health costs are not eliminated but redistributed to other parts of the social formation in ways that generate additional costs" (Burke, 2000, p. 181).

The arguments about the advantages and disadvantages of private investment in home support are contentious. The quality of care provided by private home support agencies is variable; some agencies provide high-quality care, while others deliver home support services in ways that decrease the quality of care consumers receive. The quality of service provided by private agencies is in part related to the quality of the workers performing these services. Private agencies typically pay lower wages to home support workers than public systems and tend not to provide them with benefits or travel expenses. The lack of benefits and low wages offered to workers from private agencies acts as a disincentive for skilled workers to be employed under those conditions or even remain in this field. A participant from Alberta wrote, "The people who work for the region now earn much less with the private home care agency in this area. Workers use their own cars and get very low mileage [reimbursement] if any mileage at all. Mainly they work in the seniors' homes in [a particular small town] and they send them from [the same small town] to me" (AB interview participant).

A Québec consumer described the wage differential between public and private home support workers, and the effect this had on the quality of care:

I once asked a [local community service centre] director why so much was outsourced to private agencies. He told me it was because the agencies paid their people $7 or $8 an hour. If they paid them $15 or $16 an hour, they would not give these contracts to private agencies, they would do it themselves. So for the time being, the logic that they have is that, if it costs less, let's outsource it. It's a capitalist logic, but it is true that it is a correct one because it is normal that a private agency would want to make a profit. However, these profits are at the expense of persons with disabilities. (QC video participant)

As such, skilled workers often seek employment in institutional settings that offer better wages and benefits. As a result, private home support agencies suffer from rapid employee turnover and less experienced workers, and users must constantly retrain new assistants to properly care for them. Clients of private agencies often find that because their workers are constantly changing, there is little chance to build trust or rapport. It also entails increased stress for clients who are unsure who will provide their home support from one day to the next. As a research participant from Alberta wrote:

With for-profit agencies taking over home care, there are often numerous people performing a person's care. It is quite uncomfortable for both parties. A person loses their modesty/dignity. Also, with numerous workers, the care is no longer consistent so it increases your chance of medical problems, e.g., skin conditions. (AB focus group participant)

Moreover, private home support agencies tend not to offer the full range of services since it is more profitable to offer less than more as explained by this participant in Québec: "A private company cannot offer wall-to-wall services, because it is not profitable for it to do so, in purely capitalist terms" (QC focus group participant). As a result, clients of private home support agencies are not always guaranteed access to the same services that are offered by public-run agencies. This difference is especially problematic in rural areas, where there is relatively less choice in service providers and workers must travel longer distances to support their clients. For instance, although New Brunswick policy states that home support services must be offered on a 24 hours a day, seven days a week basis (Government of New Brunswick, 2001), one New Brunswick participant argued, "In the rural areas it is hard to find qualified support workers due to low wages and no compensation for mileage and time spent to get to clients who often only get a few hours of paid support per week" (NB policy template summary). Privatization tends to exacerbate existing service inequalities between rural and urban locales. Finally, public accountability to provincial and territorial standards of care decreases in a private system, which leaves people without a voice and with no recourse if they choose to contest a decision.

There are some definite disadvantages to privatization, however, some consumers and home support advocates argue that privatization also provides people with disabilities greater choice in their service providers and how their needs are met. Participants explained that this degree of choice is important to maintain, given the ongoing debate over unionization. As mentioned in the preceding section (5.7, "Unionization"), many home support users and advocates fear that unionization of home support workers will undermine consumers' control over how their home support services are performed. Since publicly funded workers are more likely to be unionized, some argue that privately operated agencies may allow consumers greater choice and control.

One consumer described how an investment in quality was needed in the public system:

When I was working at the college I was able to afford a cleaning lady to come in, that was her business. She came when I was at work. I could tell the minute I opened the apartment door that she was there. She did her job, she did it wonderfully, I was totally satisfied. Now my home care worker comes in and when she leaves, you can't even tell that she's been there. The level of service is different. And that's my beef because just because I have a disability, that doesn't mean I should be subjected to a lesser quality of service than those who can care for themselves or those who can afford otherwise. If the government is going to provide a program that allows for homemaking services, then I think they should inject the money, the staff and the training and everything involved to make this service adequate so we can live healthy, productive lives. (NT focus group participant)

5.8.1 Privatization recommendation:

Invest in public health system while also providing choice to

consumers

Many consumers involved in this research project recommended investing in the public system to improve its quality, and had serious reservations about the trend toward privatization. As stated by two participants: "I would propose that more funding and support be put into provincial home care" (PE interview participant). "Please don't allow privatization of our health care system" (SK interview participant).

Consumers encouraged investing in public systems of health and home support. This enables governments to play a role in ensuring that central principles and guidelines for the services are being adhered to. Concurrently, consumers wished to see a number of options made available to them, including services that are publicly funded and administered, services that may be publicly administered except where the service is presently privately subcontracted, and a self-directed, direct funding approach to service.

5.9 Placing Home Support Policy Recommendations into Policy and Program

Context

For many people with disabilities, home support is the gateway to community participation in whatever form that may take. However, it remains important to also recognize that, in addition to the obstacles they face related to accessing home quality support, people with impairments must simultaneously attend to myriad barriers associated with, for example, parenting and getting an education in a systemically ableist society.

Even the most well-funded home support program will not by itself grant people with disabilities full access to rights and freedoms enjoyed by those without impairments. Inaccessible housing, sidewalks, buildings and transit are all significant barriers to full social and civic inclusion of people with disabilities (Morris et al., 1999). Income, accessible housing, and home support services are linked, yet the policies governing each of these areas conflict with each other. A research participant in Northern Ontario documented on video how the physical inaccessibility of her kitchen necessitated her receiving home support for meal preparation. She would have preferred an accessible kitchen, however the funding was not available for that type of renovation. Another participant stated:

Lack of accessible housing is the reason for my current need for home support. If I could live in an accessible space, my need for assistance would decrease dramatically. . . . I can never hope to live in an accessible environment because my income is just above most limits for support, and I can't save as I use all my income just to stay independent. (AB interview participant)

Government policy makers must integrate home support provision with existing programs and policies for people with disabilities involving Independent Living, housing, transportation, employment and education. When programs work together to reduce barriers to participation, it will be easier for consumers to get involved in policy making.

I don't think . . . the direct public [realize], as well as the funders of disability programsâ€"they don't communicate with each other. There's no understanding of actually what people require. So if you have an educational program . . . the door for education is opened up but if [you] don't have attendant care in [your] home, how do you get to the educational program if you can't even get out of bed? (ON video participant)

In order to encourage participation by people with disabilities in policy making, government officials, policy makers and administrators must adopt a more holistic approach to disability by recognizing the interplay between the need for home support services and a range of other policies and services that are intimately related. When disability barriers are not addressed holistically, we can expect that life opportunities for Canadians who live with impairment will be reduced and the need for personal supports will be high. When social, economic, political and geographic barriers are reduced and appropriate personal supports are in place, people with disabilities will be able to attain their desired level of independence, interdependence (through the use of home support) and civic participation.

5.10 Canada Health Act or National Home Support Act?

Participants in this study identified several areas of home support policy and services that need to be improved. Many of the participants mentioned that they envision national standards for home support in Canada. As one participant wrote, "If there was one set of standards we would know that no matter where we lived we would have the right to be treated as human beings, with care and compassion" (AB interview participant). Another wrote,

I feel there needs to be national standards because services differ so much from province to province. My own province has poor quality care compared to most others (fewer hours provided and fewer services provided). People are tempted to move out, but many can't, and besides, that would flood the "have" provinces unfairly. So we need national standards AND federal money in order to meet those standardsâ€"federal money that is earmarked ONLY for home care. (NS interview participant, emphasis added by participant)

As mentioned previously, many consumers also want home support service administration and delivery to be provided through the public sector, not privately. They want to see portability of home support services increased, user fees eliminated, and programs like direct funding made available as a choice to all consumers. As home support is a necessary component of health care for people with disabilities, one could argue that it makes sense to extend the principles of the Canada Health Act (CHA) to cover home support services (at least for this population) as medically necessary insured services. The continued exclusion of home support from the CHA disproportionately disadvantages people with disabilities who rely most on the service for everyday living. Many participants outlined the need for home support to be included and protected under the CHA. A Québec participant commented, "I think that we should go back to the basic criteria of the [Canada] Health Act when we talk of activities, universality, gratuity. I think that they should all apply to home support services" (QC focus group participant). In fact, Romanow (2002) presented the possibility of revising the CHA.

The five principles of the Canada Health Actâ€"public administration, comprehensiveness, universality, portability, and accessibility (Government of Canada, 1984)â€"address some of the key deficiencies in current home support systems across the country that have been discussed in this report. For instance, portability of home support systems would be guaranteed if home support services were classified as "insured" under the CHA as would the public delivery and universality of home support services across the country. Likewise, user fees for home support services would disappear since user fees are not allowed for insured health services. Within this framework, provinces would have to comply with the principles contained in the CHA in the delivery of home support services or risk penalties to their federal health transfer funds. Provincial and territorial premiers have made it clear that they are not interested in having the federal government place conditions on the shrinking dollars they receive. Federal government allotments need to be raised, and it will be the responsibility of provinces and territories to adhere to national standards for home support. As one participant argued, "To guarantee health care that is appropriate to persons with disabilities, we have to ensure that [services] are covered by the [Canada] Health Act" (NS interview participant).

One of the key tenets of the Canada Health Act is that medically necessary services provided in hospitals by doctors and nurses should be covered. Home support services extend beyond the biomedical definition of health to encompass essential, non-medical assistance as well as personal care, and affect a range of social determinants of health. Some consumers caution against applying the Canada Health Actto home support services out of concern that medical services (e.g., bowel care) will be given priority over other types of non-medical services (e.g., housekeeping), especially when in competition for dollars from the same budget. Such an emphasis would reinforce a medical model of disability rather than promote an Independent Living model. Consumers fear that further integration of home support under the Canada Health Act would effectively wrest control from people with disabilities over home support services and give it to medical professionals.

In general, participants in this study preferred consumer-controlled models of home support services. As one Manitoba participant argued, "personal supports should meet the principles in the Canada Health Act. The only part of the act which might be problematic is the 'public administration' part because this may be interpreted as not allowing for self-managed options" (MB interview participant). Thus, any modification of the CHA to include home support services would require the use of a broader definition of health and allowances for consumers to direct the home support services they receive.

Consumers recognize that privatization and ongoing disputes between the federal government and provincial/territorial governments erode the overall strengths of the Canada Health Act. Since the Canada Health and Social Transfer (CHST) block fund was implemented in 1996, replacing the Established Programs Financing (EPF) and Canada Assistance Plan (CAP) programs, the jurisdiction and power of the Canada Health Act, like the federal government's control over health, has diminished. Some believe it is unwise to commit the future of home support to a piece of weakened legislation of questionable longevity.

Another approach is to develop a new policy framework that recognizes the essential role of home support in enabling citizenship for people with disabilities. This could take the form of a National Home Support Act or a National Disability Supports Program that includes home support. These options emphasize citizenship for people with disabilities. As Jenny Morris (2001) stated in her writing about personal supports, "The central focus should be on issues of citizenship and rights as well as notions of choice and control over care." She concluded that society is in need of an ethic of care that is based on the principle that to deny the human rights of our fellow human beings is to undermine our own humanity. The provision of home support, she argued, should recognize that all people, regardless of the nature of their impairment, have the capacity to express preferences.

Home support services are not the same as other medical services covered under the CHA in that they involve considerable non-medical components of care. Within a citizenship framework home support would not be limited by a narrow, biomedical definition of necessary health care, but would include broader dimensions of psychosocial, emotional, mental, and spiritual health and highlight the notion of choice and opportunity.

Disability is defined by some as the experience of oppression that comes from the interaction between an individual who lives with an impairment and other people, policies, services or spaces that results in a barrier (see Linton, 1998). Inadequate home support policies and programs can operate to create disability for Canadians living with impairments who may, for example, be forced to forego opportunities for employment or university education. Testimonials of frustration and dashed dreams were expressed by a number of participants in this study.

Whether home support is included in the Canada Health Act or under a separate piece of legislation, such as a National Home Support Act or a National Disability Supports Program, it is critical to ensure integration of all factors identified by consumers as indicative of quality in home support, including consumer choice of worker, service, schedule and location. It must also utilize a broad definition of health and quality of life that promotes the citizenship rights of people with disabilities.

5.11 A Call for a National Strategy

Based on a thorough review of the data, members of the analysis and research teams recommend a call for the development of a national strategy on home support. Such an initiative should be built on collaboration between consumer organizations and focus on setting national standards, preserving mobility rights, and increasing federal funding for home support. The public must be made aware that home support is an issue that affects health and enables full citizenship. The lack of support services denies people with disabilities the chance to exercise the choices and opportunities that many able-bodied Canadians take for granted. Consumers involved in this study identified a twofold strategy to combat cuts to home support: a concerted lobby effort, and a public education campaign. One participant stated, "I think we need to lobby the government, local politicians, and educate the public on the issues" (PE interview participant). Effective lobbying strategies should be organized nationally, but also involve specific coordination and mobilization of provincial and regional campaigns. A multifaceted lobbying strategy has greater potential to garner attention from a larger audience, increase pressure on power-holders and effect change on a national scale. Lobbying efforts must also aim to clearly identify, acknowledge and forcefully challenge the relations of power and dominance in the field of home support that serve to marginalize the perspectives of people with disabilities. Challenges to consumer-generated recommendations based on experiential expertise and qualitative analysis must also be met and countered. When the marginalizing ideologies that support the interests of powerful groups become more transparent they will become easier to dismantle.

6 Discussion and Conclusion

6.1 Understanding the Cuts to Home Support Services

Home support services are essential for fostering the health, citizenship and quality of life of people with disabilities. However, recent trends in the funding, development and administration of home support policies and services are eroding the quality and effectiveness of these services for people with disabilities. Across the nation, a decreasing range of home support services are being offered to a shrinking number of individuals as this and other studies have shown (Krogh, 2001, 2004; Krogh & Johnson, in press). The reasons behind this growing gap are political, economic and ideological in origin.

Throughout the 1990s, a wave of fiscal conservatism permeated all levels of the Canadian federal and provincial governments. Government officials became more concerned with budgetary restraint, economic efficiency and the "streamlining" of government programs and services in an effort to pay down the deficit. Health funding and services underwent major changes and reorganization in ways that reflected this fiscal conservatism (Burke, 2000). In 1989, the federal government unilaterally reduced its cash contributions for health and social services to the provinces by $42.1 billion, of which $30 billion would have been spent on health services (Morris et al., 1999). Between 1991 and 1996, the federal government and many provincial governments introduced a variety of cost-cutting measures that negatively affected health services and the people who rely on them (M. Morris, 2001). Perhaps the most dramatic of these changes was the Canada Health and Social Transfer (CHST), implemented in 1996â€"a system of block funding that combined federal government transfer payments to the provinces and territories for health care, postsecondary education, and social services. The implementation of the CHST was accompanied by a loss of $6.2 billion from the cash portion of federal funds transferred to the provinces for health and social services (Morris et al., 1999).

The funding cuts implemented with the CHST were also accompanied by a significant softening of the federal government's stance on ensuring national health standards. Under the old system of funding, the provinces were mandated by the federal government to follow the Canada Health Act (CHA) (1985) by providing care to all those in need of health services. Failure to do so could result in the withdrawal of federal funding. Under the CHST, however, provinces were only mandated to adhere to the principles contained in the CHA, which meant that they were allowed greater flexibility in the management of health services delivery (Masuda, 1998). Provincial governments, left with the burden of reorganizing their policies and services to accommodate the drastic cuts to their budgets, exploited this new flexibility in following the principles of the CHA. Some provincial governments responded by limiting the range of ‘insured services’ (which under the CHA must be provided to all in need) that they offer or by restricting insured services to only those applications that the government deemed to be necessary from a strictly biomedical standpoint (Council of Canadians with Disabilities, 2002). By using restrictive interpretations of "need", "insured service", and "medical necessity", provincial/territorial governments have been able to legitimately cut funding from home support (Krogh & Johnson, in press). Some provinces not only introduced new more restrictive categories to determine eligibility, but also instituted user fees and maximum limits (caps) on the amount of services offered to any one individual.

As a provincially administered health service, home support has been heavily affected by the combined emphasis on fiscal conservatism and the notion of biomedically necessary services. Home support services are ambiguously placed within health care funding structures. While home support is essential for the maintenance of good health for many people with disabilities, it also involves many services that do not fit neatly under a rigid biomedical definition of health services, but that nevertheless contribute to mental and physical wellness, quality of life and community involvement. Home support services are tied to broader social determinants of health such as employment status, education, income, and social inclusion. Adequate home support can positively influence all these aspects of a person's life, but conversely, inadequate home support will lead to deterioration in any or all of these areas. However, more and more government officials and home support program administrators now do not recognize services related to housekeeping (including ensuring basic hygiene in bathroom and kitchen areas) or meal preparation as "medically necessary" health services and have thus been able to justify cuts to home support services, and introduce caps or user fees. Given that these are the two most frequently requested services (McColl 2005), governments or regional health authorities can reduce their costs significantly by imposing stricter criteria, e.g., narrower biomedical parameters, to define and allocate services. Home support was not common at the time the Canada Health Act was formulated and as a result, is not protected by such legislation. Thus home support services have become easy targets for government officials fixated on cutting health budgets to meet new fiscal realities (see Krogh & Johnson, in press, for a discussion of medical and economic reductionism in home support policy).

Policy trends have resulted in reduced levels and quality of home support services within many regions in Canada during the past decade. Home support for housekeeping has now been virtually eliminated in many regions across Canada (Council of Canadians with Disabilities, 2002). As needs for services increase, the level of service has decreased in many regions within Canadaâ€"British Columbia and Québec are two cases in point. In British Columbia, steady budget cuts to the home support system between 1994 and 1997 led to a 20 percent reduction in the number of people receiving home support while the estimated need for such services has increased dramatically (Sanford, 2000). In Québec, home support policy was negatively affected by changes in provincial government leadership. A new policy entitled, "At home: The first choice" (Chez soi: Le premier choix) was unveiled in 2003 by the provincial government at the end of its mandate. This policy established three programs to integrate the developments that had occurred in home support policy over the previous several years. A new government was elected in April 2003 with a different agenda of state reform and increased private/public partnerships for home support services. The previous government had allocated $130 million in its 2003-2004 budget to implement Chez soi, but after the change in provincial leadership, allocated budgets amounted to only $40 million per year (QC policy template summary; Gouvernement du Québec, 2003). These funding reductions also occurred in a context of growing need for home support services. The report, Enquête Québécoise sur les Limitations d'Activités 1998 [Québec Survey on Disabilities and Activity Limitation 1998], published by the Institut de la statistique du Québec (Gouvernement du Québec, 2001), noted growing rates of disability among the population living in private residences. The rate of adults reporting living with a disability was at 15.2 percent in 1998, up from 11.5 percent in 1995 and 10.4 percent in 1986. This study also noted that roughly 480,000 Québecoisâ€"50 percent of the disabled population 16 years of age and olderâ€"need help to perform their daily activities. Almost 40 percent of people requiring assistance have inadequate home support to fulfill their needs (QC policy template summary).

Paradoxically, over the same time period that there was a reduction in home support, there was also growing rhetoric among government officials about the need to move toward out-of-hospital, home-based therapies and community care. This rhetoric must in part be understood as being economically motivated in the context of research that has demonstrated that medical services delivered at home by home support workers are less costly than by medical personnel within institutions (Romanow, 2002). Far from a sign of the government's appreciation for the principles of Independent Living, this rhetoric was used as a justification for offloading to the home support sector many inpatient services that were formerly provided by medical institutions (Morris et al., 1999). Recent federal initiatives to restore funding to home support programs have been made more to accommodate the offloading of inpatient care to home support systems than to improve existing home support services for people with disabilities. For instance, the Commission on the Future of Health Care in Canada (Romanow, 2002) recommended that new home support funding should be devoted to expanding "three priority areasâ€"home mental health case management and intervention, post-acute home care and home palliative care" (p. 187). The report suggested that, while no new funding has been specifically targeted for improving existing home support services for people with disabilities and chronic illnesses, future funding could be dedicated to this area, resources permitting. As Morris argued, these new funds have not kept pace with the needs of Canada's growing and aging population (M. Morris, 2001), especially given the recent trend to offload inpatient services to the home support sector. Furthermore, this shift has endangered the health of people with disabilities whose home support workers are administering increasingly technical procedures such as tracheotomy care, tube feedings and oxygen administration without the necessary resources or qualifications (Burke, 2000).

When home support advocates challenge provincial governments, regional health authorities and home support administrators on the implementation of service cuts and restrictive policies, these officials may try to evade responsibility and accountability by blaming each other or the federal government for the cuts to health care (Krogh, 2001; Krogh & Johnson, in press). While the federal cuts to health care funding are largely responsible for the decline in the quality of health services, it is also important to note that provincial governments and regional health authorities make conscious and informed decisions about the allotment of federal funding for health care within their jurisdictions. These government officials allocate federal health care funding according to the perceived health needs of the province or region, principles of economic efficiency, and the interests of the most powerful stakeholders involved in the field of health care. These criteria do not serve the needs of people with disabilities very well. The biomedical focus on providing only "medically necessary" services tends only to legitimize the importance of the medical aspects of home support for people with disabilities, while the non-medical aspects of home support are portrayed as "extra" services, even though these non-medical services allow people with disabilities to experience comparable lifestyles and rights enjoyed by non-disabled citizens. Within this framework, keeping people breathing may be considered sufficient. The emphasis on economic efficiency in the health care sector virtually ensures that services categorized as extra will be restricted or eliminated. Finally, in contrast to doctors, nurses, medical specialists and patients without disabilities, home support users, providers and advocates have relatively fewer resources and opportunities to influence government policy and funding decisions. In fact, many people with disabilities require an adequate level of home support in order to be able to make their views heard within social and political arenas.

The above arguments underscore the notion that the attitudes, biases and assumptions of government officials, medical professionals, home support administrators and the general public regarding disability are at least as important as the economics of the health care sector in understanding the cuts that have been made to home support services for people with disabilities across Canada. Home support services have been disproportionately affected by the destructive emphasis on economic efficiency precisely because it is easier to justify cuts to services that are classified as ‘extra’ and because those who use these services are not seen as a priority. These cuts have had myriad effects that intersect to seriously undermine the health, quality of life and citizenship of people with disabilities. The cuts to home support are particularly unjust and unconstitutional since the more restrictions government officials choose to place on home support services, the less able people with disabilities are to effectively organize to protest these restrictionsâ€"instead a disproportionate amount of their personal energy and resources is devoted to basic survival (Krogh, 2001). As such, attempts to ameliorate home support policy and service for people with disabilities must simultaneously attend to political, economic and ideological dimensions of the discrimination that underlies the budget cuts to home support.

6.2 The Marginalization of Consumer Perspectives

People with disabilities have considerable and valuable knowledge about home support policy and service by virtue of their intimate experience with the home support system. Yet, the perspectives of people with disabilities concerning home support policy and service have not been widely solicited by government officials or home support administrators. When people with disabilities are consulted about these issues, their perspectives are rarely translated into meaningful changes to home support policies and services. This lack of acknowledgement of their perspectives is a major source of frustration among home support users and leads to a sense of disempowerment, hopelessness and further isolation for many individuals. The reasons why the perspectives of people with disabilities are routinely ignored or disregarded are multiple and complex, but they have their roots in unquestioned and ubiquitous ideologies of disability and impairment. Normative ideas of what constitutes authoritative, credible knowledge also tend to diminish the value of consumers' experiential knowledge as does the dominant position of ‘experts’ in interpreting and constructing credible knowledge. These ideologies all act to devalue and marginalize the knowledge of people with disabilities.

Social perceptions of people with disabilities are variable, but insofar as they are based on inadequate knowledge of people with disabilities' lives, they are often stereotypical in nature and inaccurate. Such stereotypes include characterizations of people with disabilities as passive (Linton, 1998), dependent (Oliver, 1996), incapable or childlike (Saxton et al., 2001). Those with chronic illness, pain, severe fatigue or other non-visible impairments are often seen as malingerers or hypochondriacs by home support and medical personnel (Wendell, 2001; Young, 2000). Home support staff who adopt or accommodate these stereotypes come to view clients who express their discontent with policy or service as ungrateful or selfish (Masuda, 1998). People with disabilities encounter these stereotypes from medical professionals, home support administrators, workers, family members, co-workers, in the media and among the general populace. These stereotypes collectively instruct people in how to understand and respond to people with disabilities. When users of home support are seen as passive, childlike, incapable, dependent or lazy, it is unlikely that their views and concerns about policy reform will be actively solicited or that their knowledge of home support will be considered credible and authoritative. Consumer use of home support services to facilitate community engagement, e.g., paid employment, may not be deemed a funding priority by policy makers. Insofar as stereotypes lead to specific actions, they can seriously undermine the efforts of people with disabilities to challenge home support policy and service and live engaging and fulfilling lives.

In addition to damaging stereotypes of people with disabilities, normative ideas of what constitutes credible and authoritative knowledge also act to marginalize the perspectives of people with disabilities. Foucault argued that,

Each society has its regime of truth, its "general politics" of truth; that is, the types of discourse which it accepts and makes function as true; the mechanisms and instances which enable one to distinguish true and false statements, the means by which each is sanctioned; the techniques and procedures accorded value in the acquisition of truth; the status of those who are charged with saying what counts as true. (1980, pp. 131)

In North America and much of the western, industrialized world, science has become the dominant regime of truth. That is, scientific discourse is currently widely accepted as the most credible and authoritative set of techniques and procedures with which to build knowledge of the world. A major axiom of science is that in order for knowledge to be classified as truth, it must be objective and accurate. Scientific methodology involves a highly codified set of techniques systematically designed to ensure objectivity and accuracy. Scientific experiments are designed to control variables, eliminate the potential for bias and measure observable phenomena as accurately as possible. To this end, quantitative numerical and statistical data are more highly valued than qualitative data since it is widely believed that numbers do not lie.

Science is hegemonic in our society, meaning that it has achieved a status of unquestioned dominance in relation to other, nonscientific ways of knowing. Nonscientific knowledge is considered to be inadequate compared to authoritative scientific knowledge. People with disabilities' knowledge of home support policy and service is not achieved through scientific experimentation, but rather through their personal observation and experience. Although a home support user often has considerable knowledge of home support policy and service by virtue of their daily experience with home support, their knowledge is not highly regarded in part because it is not seen as scientific and thus, by implication, is deemed subjective or biased. This stance was exemplified in the reactions of home support administrators to the Beyond Four Wallsvideo that vividly portrayed the views of people with disabilities on the importance of home support to their health, well-being and citizenship. After watching the video, several home support administrators described the video pejoratively as unscientific, subjective, or as "just personal stories" that are necessarily an illegitimate form of data (Krogh, 2002). The knowledge of the home support users involved with the video was disregarded because it was not perceived to fit within a scientific paradigm of understanding. We can anticipate a similar reaction, by some, to the qualitative quotations from consumers with disabilities within this National Snapshotresearch report.

Connected to the notion that science is the only credible and authoritative knowledge is the role of experts in interpreting and perpetuating authoritative knowledge. In the fields of home support policy making and service delivery, structured as they are by economic efficiency and medicalization, certain groups of actors are considered to be more authoritative and credible than others. Economists, medical professionals and scientists all have various kinds of credentials or professional connections such as university degrees, professional certification and affiliation and government or corporate positions that are widely regarded as valuable. These professional affiliations and educational credentials are forms of social capital, or socially recognized forms of prestige, that confer ‘expert status’ on economists, medical professionals and scientists within the field of home support (Krogh and Johnson, in press). As such, the observations and recommendations of these 'experts' on home support policy and service are more frequently solicited and more highly regarded than those of other groups. By contrast, people with disabilities are not seen, as a group, to possess these valued forms of social capital and so are not viewed as credible or authoritative experts on matters related to home support. Those who are deemed "experts" have the power to define the priorities and direction of home support policy and service; the effects of this power can be seen in the continuing influence of the medical model and the need for economic efficiency over home support, despite the attempts of disability advocacy organizations to advance the social model and citizenship as alternative priorities within home support.

The ubiquitous nature of negative stereotypes about people with disabilities, the hegemony of scientific knowledge and the acknowledgement of claims of certain experts to the exclusion of others all contribute to the marginalization of the insights of people with disabilities concerning home support policy and service. These values are often not explicitly articulated, yet their effect can be stifling for people with disabilities. Foucault recognized the connection between the dominance of certain kinds of knowledge and the maintenance of relations of inequality. He wrote, "power and knowledge directly imply one another . . . there is no power relation without the correlative constitution of a field of knowledge, nor any knowledge that does not presuppose and constitute at the same time power relations" (Foucault, 1977, p. 27). Power can define what constitutes legitimate knowledge and knowledge often legitimizes the use of power; accordingly, all knowledge is necessarily political.

The abovementioned ideologies not only exclude the participation of people with disabilities in defining home support policy and service, they legitimize actions that further the political and economic goals of government officials, medical professionals, home support administrators and other powerful groups at the expense of home support users (Krogh & Johnson, in press). The exclusion of the perspectives of people with disabilities has more to do with ensuring the continued dominance of the interests of certain groups' priorities to the exclusion of others than it has to do with the inherent truth or value of those perspectives. Since these ideologies legitimize the actions of dominant groups in the field of home support, it is unlikely that advocacy efforts aimed solely at educating those in control, i.e., medical professionals, home support administrators and staff and government officials, will be effective in increasing the participation of people with disabilities in home support policy and delivery. In addition to education, advocacy efforts must also aim to candidly identify, acknowledge and challenge the relations of power and dominance that characterize the field of home support. The political and economic interests of these powerful groups in maintaining home support policy and service in its current state need to be clearly identified and thoroughly critiqued. Once this is accomplished, the role of marginalizing ideologies in supporting these interests will become more transparent.

6.3 What Consumers Have to Say about Home Support

The various forms of social, economic and political marginalization experienced by many people with disabilities in combination with damaging stereotypes and misunderstandings about disability and home support have effectively excluded the perspectives of consumers in home support policy making and service delivery. It has been established in this report that the lives of people with disabilities are intimately affected by any modifications to home support policy and service; in practice, the potential for deterioration in the consumers' health, wellness, quality of life and ability to exercise citizenship is realized when budget cuts are implemented. It is extremely problematic and troubling that decisions concerning home support are often made without significant consultation with or consideration of the people who would be most directly affected by changes. It is even more disturbing when one recognizes that cuts to home support services further marginalize the perspectives of people with disabilities by removing the supports they need to make their voices heard.

Recognition of these circumstances alone should provide sufficient grounds for governments and policy makers to meaningfully involve people with disabilities in home support policy making decisions. However, beyond public officials' responsibility for making home support policy more democratic, there are other important reasons why they should consult people with disabilities regarding home support policy and service decisions. In particular, it is incumbent upon public officials to recognize that people with disabilities are experts in their own right regarding the effects and effectiveness of home support policy and service. Although people with disabilities do not, as a group, possess degrees in science, economics or policy administration, many have considerable education and credentials in a multitude of disciplines. But beyond formal education, most people with disabilities have experiential credentials in home support policy and service delivery. By virtue of their direct and intimate involvement with home support workers, administrators, and the system in general, every home support user has valuable perspectives on how policy translates into service delivery and how, in turn, service delivery affects users. More than economists, medical professionals and administrators, consumers are experiential experts in home support program evaluation; they are best equipped to discuss what works and what does not. By elaborating on "real world" examples and providing descriptive accounts of personal experiences with home support policy and service, home support users can offer insightful and practical suggestions on how to make improvements in these areas.

A broad and diverse range of home support users' perspectives can promote a clearer understanding of the main issues that require attention and action to improve home policy and service. This report, by synthesizing the knowledge of people with disabilities across Canada on the subject of home support, provides an example of how consumers of home support services can identify key problem areas and suggest ways these might be ameliorated.

This report is the result of a partnership between university researchers and the disability community. The research partners recognize and wish to affirm people with disabilities' right to participate in policy making that directly affects them. People with disabilities have insightful and valuable perspectives on home support policy and service and can contribute useful guidelines and recommendations concerning how policy makers can significantly improve home support in ways that foster health, quality of life and citizenship for people with disabilities. The issues and recommendations included in this report originate directly from productive discussions held with a cross-section of the disability community across Canada, thus this research is based on the combined concerns and expertise of Canadians with disabilities on home support policy and service. It is crucial for home support policy makers and service providers to listen to and understand home support from the perspectives of those who use these services. Democratic and equitable home support policy making needs to occur in direct and meaningful consultation with home support users. The authors hope that the recommendations contained in this report will be seriously considered by decision makers and that this report can be used to foster appreciation among home support policy makers and service providers for the valuable role that people with disabilities can play in policy making. The perspectives of people with disabilities are a powerful counterpoint to ideologies that exclude and marginalize people with disabilities from civic and social participation and can help home support officials to understand the importance of using the social model of disability as a basis for designing future home support policies and services.

Home support users across the country have identified problems in the areas of assessment, eligibility, regionalization, portability, user fees, appeal mechanisms, staff training, direct funding programs, unionization, and privatization; also of concern is the vulnerable position of home support, as a result of being excluded from the Canada Health Act. While these issues have been treated somewhat separately in this report, it is important to recognize that there are important connections and significant overlap among them. Government officials must look beyond home support to disabling barriers in society that actually force people with disabilities to be dependant on home support. Fostering greater accessibility in public spaces, education, employment, and housing are all ways to counter disabling barriers that people with disability confront daily. Government officials should recognize how integrating these elements with the recommendations concerning home support made by the participants of this study would greatly increase the independence and life opportunities of people with disabilities in Canada.

6.4 Areas for future research

This research report should be considered a "national snapshot" of home support policy and service issues with an emphasis on the perspectives of people who have primarily physical disabilities who require the service. Many of the issues raised and explored within this study can be examined in greater detail and additional perspectives would be valuable to solicit and understand; in particular, statistical information on how many people have had their level and range of home support services reduced or eliminated over a certain period of time, and possibly an analysis of how home support use may correlate with indicators of independence, such as employment. The team had a difficult time defining the population involved in this study. We would like to see future research projects examine, for example, the issues related to support required for people with primarily developmental, mental health or other forms of disability. We encourage future researchers to use methods that can capture the perspectives and analysis of these users of home support services.

This project emphasizes the need to foster collaboration between government officials, home support administrators, researchers, community disability organizations and people with disabilities in home support policy. More research is needed on methods of investigating and elaborating on specific strategies and mechanisms that could be implemented to effectively foster collaboration in home support policy making. Researchers with backgrounds in community research and advocacy would be well suited to this task. In addition, we believe it would be useful to further explore alternative and arts-based media such as video and photography for collecting consumer-based expression of experiential expertise.

This report has presented exploratory and preliminary findings regarding Canada's North, comprising Nunavut, Yukon and Northwest Territories. These areas by virtue of their remote location, low population density and relatively large indigenous population, share similarities in their home support policy and service context that are considerably different from more southerly provinces and regions. Although this report discusses some issues that are unique to the North, more research is needed. Further research should explore how indigenous understandings of home support, community, disability and independence or interdependence compare with southern conceptions of these issues. Research should also strive to evaluate to what extent policies and services derived in southern contexts are suitable to the North. Researchers should solicit indigenous perspectives on how inadequate home support policies could be altered to make them more appropriate and relevant for Northern communities. Any consultation with indigenous communities must be sensitive to the important role that elders play in their communities and should involve elders in research planning, decisions and policy making.

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Appendix A: Home Support Policies Template

A National Snapshot of Home Supports for People with Disabilities Template for Data Collection The following selected regions have submitted data:

Region:

Respondent Information 1. Province or territory: 2. Name and position of person completing this template: 3. Contact information of person completing the template (address, phone, fax, e-mail): 4. Name of organization: 5. Names of individuals consulted during completion of this template and their government department or organizational affiliations: Name Affiliation Contact Information 1 2 3 6. Names of documents used to complete this template. Please print this chart and include it with your documents. These documents will be critically important to completing this template. Government Legislation Title: Date: Author: Sponsor: Policy Manual Title: Date: Author: Sponsor: Guiding Principles Title: Date: Author: Sponsor: Definition of Disability Title: Date: Author: Sponsor: Eligibility Criteria Title: Date: Author: Sponsor: Assessment Tool Title: Date: Author: Sponsor: User Fee Calculation (and maximums) Title: Date: Author: Sponsor: Service Calculations Title: Date: Author: Sponsor: Direct Funding Eligibility Criteria Title: Date: Author: Sponsor: Direct Funding Assessment Tool Title: Date: Author: Sponsor: Direct Funding Service Calculation (and maximums) Title: Date: Author: Sponsor: Evaluation of Home Support Service Policy Title: Date: Author: Sponsor: Evaluation of Home Support Instrument Title: Date: Author: Sponsor: Standards for Training Title: Date: Author: Sponsor: Appeal Policy Title: Date: Author: Sponsor: Other: Title: Date: Author: Sponsor:

Legislation 1. Is home care in your province governed by provincial/territorial legislation? 2. If there is no specific legislation governing the delivery of home support, what guides its implementation, e.g., policy, principles?

Policy Definition of policy manual. 1. Is there a home support policy manual for your province or territory? If yes, please send the document to CCD. 2. When was this policy manual last updated?

Principles 1. Is there a clearly stated set of principles that guide the home support program in your province or territory? If yes, please include a brief summary here and send the full document to CCD.

Location of Service 1. Is home support provided... Yes No in the home? in the workplace? in the education system? in community settings? Other? (If yes, please list)

Types of Services 1. Which of the following kinds of services are included as part of home support in your province or territory? Bathing Washroom Eating Assistance Dressing Meal Preparation Homemaker - Cleaning Homemaker - General Household Chores Personal Assistant: Accompany to Medical Appointment Personal Assistant: Accompany to Exercise, e.g., swimming Other: Other:

Recipients of Home Support - Region A 1. How many people are receiving home support in your province or territory at this time? Ages Men Women 18-29 30-44 45-59 60-74 75+ 2. Who, in your province or territory, is not included in the provincial or territorial legislation governing home support, e.g., people with mental health or developmental disabilities? 3. Have there been any significant trends in the last 24 months in terms of who no longer receives home support? Please consider factors such as gender, ethnicity, region, type of impairment (e.g., mobility, pain, fatigue, cognition), and type of home support service needed.

Portability 1. When a person with a disability moves to your province or territory, when do they become eligible to receive home care services? 2. Can people with disabilities who move from one region to another within your province or territory be assured of maintaining their home support services, i.e., same number of hours, schedules, etc.? If no, please explain (e.g., is a reassessment process initiated?)

Service Delivery 1. Who delivers the majority of home support in your province or territory? Please give approximate percentages for each type of provider listed below. Regional health authorities Voluntary sector Municipal governments Other, please list: 2. Are home support workers unionized? (Please check as many as are applicable) Unionized Nonunionized Government employees Employees of private companies Employees of nonprofit organizations Hired by consumers

Eligibility/Assessment 1. For the purpose of home support eligibility, does your home support program define disability? If yes, please include a brief summary here and send the full document to CCD. If no, does another piece of legislation or policy cite a definition of disability that is used for the purpose of home support eligibility? If yes, please include a brief definition and summary of the legislation here and send the full document to CCD. 2. What are the eligibility criteria for receiving government-subsidized home support services in your province or territory, i.e., personal financial contribution, disability type, etc.? 3. Who tends not to be eligible to receive home support services in your province or territory? e.g., people with fibromyalgia, head injury, mental health disability? Which criteria function to exclude these people? 4. Is a standard assessment tool used to determine eligibility for home support and/or amount and type(s) of home support? If yes, please include a brief summary here and send the full document to CCD. 5. During the assessment, which of the following factors are considered? Please comment on how this impacts upon the individual and their eligibility for services. Urban/rural location Aboriginal status Family/friend support 6. Who conducts the assessment of eligibility for home support services? Nurse Social worker Occupational or physical therapist 7. Are user fees required for home support services in your province or territory? If yes, please briefly describe how they are calculated here and send the full document to CCD. 8. Is eligibility for services or user fees based on consumer or family income? Income Tested Not income Tested Eligibility User fees 9. Are assets, e.g., savings, trust funds, property, vehicles, etc., used in calculating eligibility or user fees? Assets used Assets not used Eligibility User fees 10. Before home support services are approved, do consumers require a backup plan to cover their needs during times of service interruption, e.g., worker falls ill, takes vacation, leaves suddenly? 11. Are family members or close friends expected to provide support to their disabled family members? (Please differentiate between family/friends who live with the user and those who live in the vicinity.) 12. Are there ceilings (maximums or caps) on the amount of provided? If yes, what are they within your province or territory? Are they assessed by amount of funding per day/week/month or the number of hours per day/week/month? 13. How are ceilings on service in your province or territory determined? Who ultimately makes this decision within your province or territory?

Direct Funding/Self-Managed Care See list of terms for definition of Direct Funding/Self-Managed Care. 1. Is there a direct funding option available in your province or territory? If yes, is it available in all regions of your province or territory? If no, where is direct funding not available in your province or territory? 2. Does policy dictate that direct funding/self-management be presented as a choice to all individuals? 3. How many people with disabilities are receiving direct funding/self-managed care in your province or territory right now? Ages Men Women 18-29 30-44 45-59 60-74 75+ 4. Are people given clear information about the availability of the direct funding/self-management option? If yes, please include a brief description of the situation. 5. Do people with disabilities have to go through an assessment process to receive direct funding/self-managed care? If yes, is eligibility for direct funding determined by using a standard assessment tool or set of criteria? If yes, please include a brief description here and send the full document to CCD. 6. Are supports available to people with disabilities who use or wish to use direct funding/self-managed care, to assist them in their role as employers? If yes, please describe these supports and who provides them. 7. Can another person or a community organization or agency administer the funds on behalf of the self-manager, e.g., a service broker agency or Independent Living Resource Centre? If yes, please name the people, organizations, and agencies involved. 8. Are people with disabilities who are on a direct funding/self-managed care program reassessed or monitored? If yes, please explain how often, for what and by whom. 9. How does the assessor calculate the total amount that the government will pay toward this option? 10. Within direct funding/self-managed care programs, can family members be hired as support workers? If yes, are there limitations on which family members can be hired? 11. Is there a ceiling (cap or limit) on the funding or hours of service that consumers using the direct funding/self-managed care option can receive? If yes, what is the maximum dollar amount and/or hours that a person with a disability can receive under the direct funding/self-management care option? Per week Per month Per year Amount of money Number of hours 12. Are there provisions for paying benefits to employees within the direct funding/self-managed care program within your province or territory?

Evaluation 1. Are there designated groups of people with disabilities who receive home support services as a result of special initiatives or programs within your province or territory, e.g., through de-institutionalization programs? If yes, please include a brief summary here and send the full document to CCD. 2. Are home support programs in your province/territory evaluated? If yes, please describe. How frequently are these evaluations conducted? Please send full documentation (questionnaire or form) to CCD. 3. Have people with disabilities participated in the evaluation of home support programs in your province or territory? If yes, please describe briefly the nature of that participation, e.g., developing criteria for evaluation, conducting evaluations, completing consumer surveys. Please send any documentation to CCD.

Staff Training 1. Are there specific training standards for home support workers in your province or territory? If yes, please include a brief summary here and send the full document to CCD. 2. Have people with disabilities been involved in developing these standards? If yes, please describe the nature of their involvement here. Please send any documentation to CCD. 3. Is this training mandatory? 4. Do people with disabilities participate in the training of home support workers? If yes, please describe their role in the training. Please send any documentation to CCD. 5. Is there an association for home support workers in your province? 6. Is professional affiliation or membership required by service providers of home support?

Appeal Mechanism See definition of appeal mechanism. See definition of consumer. 1. Is there an appeal mechanism for the home support program in your province or territory, e.g., an appeal board or review committee? If yes, please include a brief summary here and send the full document to CCD. 2. Are consumers (people with disabilities who use or wish to use home support) represented on the appeal board or appeal committee? 3. Do consumers have any other role in the appeal process, e.g., advocates, intervenors, etc.? If yes, please describe the role consumers play in the appeal process here and send full documentation to CCD. 4. Which decisions are open to appeal? (please check all that are applicable) 5. How many levels are there in the appeal process? 6. Who hears an appeal (at each level if applicable)? Level 1: Level 2: Level 3: Other: 7. Can consumers have an advocate present at the appeal hearing? 8. Do consumers have any other recourse if they are not satisfied with the decision of their appeal? If yes, please describe this recourse here and send full documentation to CCD. 9. Is there a confidential complaints process within your province or territory to address home support concerns that people with disabilities may have? If yes, please include a brief description here and send the full document to CCD. 10. If there is a complaint process, what are the three most common complaints received?

Consumer Participation in Policy Development 1. Are there formal procedures for consumer involvement in home support policy review, critique, design and implementation in your province or territory, e.g., community health review boards, agency committees? If yes, please include a brief summary here and send any documentation to CCD. 2. Are there informal mechanisms for consumer involvement in policy review, critique, design, and implementation, e.g., demanding meetings with politicians, media attention? If yes, please include a brief summary here and send any documentation to CCD.

Other Support Options 1. Are there other models of home support offered in your province or territory, e.g., cluster housing, individual brokerage? If yes, please describe briefly and send any brochures or literature to CCD.

Current Initiatives 1. Are there any new initiatives to address the home support needs of persons with disabilities currently being developed or implemented in your province or territory? If yes, please include a brief summary here and send the full document to CCD.

General Comments

Appendix B: Criteria for Identifying Individual Interview/Online Survey Participants, Focus Group

Participants, and Individuals to be Videotaped

Criteria for identifying individual interview/online survey participants

The Regional Coordinator should identify eight individuals who have experience with the home support system, either first hand or as the result of home support impact (i.e. a consumer of services or a person with disability not able to access services).

These individuals should:

1. understand, agree to, and sign the consent form before participating;
2. be representative of the diversity of our community so that nationally the individual interviews reflect a variety of backgrounds and experiences (i.e., cross-disability, across the adult lifespan, men/women, rural/urban, users of regular home support/self-managers, people of color, ethnic diversity, First Nations on/off reserve, differing economic status and people working/nonworking);
3. be willing to openly share ideas and personal experiences;
4. have an interest in the project and a willingness to contribute to the achievement of its goals in some way.

The majority of participants should be able to complete the interview in the form of an online survey independently, however assistance can be arranged by the provincial or territorial coordinator (e.g., locating someone to assist with the physical act of typing, literacy, etc.).

The majority of participants should be comfortable with the online format, however if for any reason this is inaccessible or uncomfortable, the provincial or territorial coordinator will conduct the survey as an interview over the phone or in person.

Criteria for identifying participants in the focus group

Provincial/territorial coordinators should identify six to seven individuals for the focus group. One or two of these individuals will need to travel to the group so that both rural and urban perspectives are represented.

These individuals will have experience with the home support system, either firsthand or as the result of home support policy impact (i.e., a consumer of home support services or a person with disability not currently able to access services).

These individuals should:

1. understand, agree to, and sign the consent form before participating;

2. be representative of the diversity of our community so that nationally, the focus groups are inclusive of a variety of backgrounds and experiences, (i.e., cross-disability, across the adult lifespan, men/women, rural/urban, users of regular home support/self-managers, people of color, ethnic diversity, First Nations on/off reserve, differing economic status and people working/nonworking);

3. be able to contribute to the "hot topic" discussion that has been assigned to that particular focus group;

4. be comfortable with sharing ideas and personal experiences in a group forum;

5. be willing to problem solve and contribute to an analysis of home support issues and strategies for influencing future home support policies;

6. respect the confidentiality of any sensitive information shared by other focus group participants;

7. have an interest in the project and a willingness to contribute to the achievement of its goals in some way.

Criteria for individuals to be videotaped

The provincial/territorial coordinator should identify one individual (or a small group) who has experience with the home support system, either firsthand or as the result of home support policy impact (i.e., a consumer of home support services or a person with a disability not currently able to access services).

This individual should:

1. understand, agree to, and sign the consent form before participating;

2. be able to exemplify a person with a disability's perspective of the "hot topic" being discussed in that particular focus group;

3. be comfortable with the videotape medium and able to set aside approximately 3 half-days for this activity (one for planning with the regional coordinator, one for shooting the video clip, and one for reviewing the content with principal researcher, Kari Krogh);

4. be representative of the diversity of our community so that nationally a variety of backgrounds and experiences will be portrayed, (i.e., cross-disability, across the adult lifespan, men/women, rural/urban, users of regular home support/self-managers, people of color, ethnic diversity, First Nations on/off reserve, differing economic status and people working/nonworking);

5. be willing to openly share ideas and personal experiences through a video medium;

6. understand that this information will be made public and that their identity cannot be protected and that sensitive or personal information should not be included;

7. have an interest in the project and a willingness to contribute to the achievement of its goals in some way.

Appendix C: Individual Interview/Online Survey Questions

For this study we are defining home supports as personal assistance provided to people with disabilities in home or community settings. This might include: assistance with dressing, eating, washing, meal preparation, homemaking, paperwork, attending an appointment, community activity, and so on.

1. What is life like for you?

a) how would you describe yourself? (e.g., gender, geographic location, culture, impairments);

b) what activities do you engage in? (e.g., volunteer work, exercise, socialization, employment);

c) what are some of your life goals? (e.g., going to school, art, job promotion, spending time with friends);

d) other comments . . .

2. What role does home support (personal assistance) play in your life?

a) what types of home support services do you receive? (e.g., assistance with meal preparation, bathing);

b) what locations do you receive supports in? (e.g., home, community, school);

c) what does it enable you to do? (e.g., leave the apartment, participate in lobbying);

d) how does home support help/hinder your physical and emotional health?

e) how does home support help/hinder your opportunities to engage in paid or unpaid work?

f) how does home support help/hinder your engagement in social activities?

g) what level of flexibility, choice and control do you want and have?

3. When do you know home support is working well?

a) what does "good quality" home support look like for people with disabilities?

b) what factors or service characteristics (e.g., flexibility, location of service, level of service) are particularly important given who you are and your circumstances (e.g., woman of color, rural resident, visual impairment, going to school)?

c) please describe an example interaction and activity in a particular setting that illustrates excellence in a home support worker or the delivery of service;

d) please describe an example that illustrates excellence in terms of the way services are administered or organized;

e) other comments . . .

4. When do you know that home support is not working well?

a) what does "poor quality" home support look like for people with disabilities?

b) what factors or service characteristics (e.g., flexibility, location of service, level of service) are particularly important given who you are and your circumstances (e.g., woman of color, rural resident, visual impairment)?

c) please describe an example interaction and activity in a particular setting that illustrates poor quality in a home support worker or the delivery of service;

d) please describe an example that illustrates poor quality in terms of the way services are administered or organized;

e) other comments . . .

5. Assessment or reassessment of home support services

a) have you been reassessed for eligibility for service during the past five years? (please describe why this process was initiated);

b) what impact did the process of reassessment have on you and your health?

c) how did reassessment affect your level and quality of service? (please give examples)

d) have you encountered challenges related to how your disability was understood?

e) have you encountered challenges related to how your life goals were understood?

f) was your knowledge of how you wanted to use home support services to achieve your life goals incorporated into the assessment process?

g) have you ever tried to challenge or appeal an eligibility/assessment decision?

h) are you expected to go to charities other than community organizations who administer service delivery to obtain services? (if so, how does this impact upon you?)

i) are you expected to ask for and receive unpaid help from family and friends? (if so, how does this impact upon you?)

j) other comments . . .

6. What home support issues are important to you and why?

Please identify three to five of the following topics that are of greatest interest and importance to you. For each, please comment on:

a) why you think this issue is important?

b) what you like/dislike about the situation in relation to this issue?

c) what solution you would propose if you are not satisfied with the current situation or what you might propose be put in place to maintain the situation in which you are satisfied.

Topics:

· finding ways to influence policy

· national standards for home support

· assessment tools and procedures

· eligibility criteria

· appeal mechanism

· user fees

· Canada Health Actprinciples (access, portability, universality, comprehensiveness, public administration)

· Canadian Charter of Rights and Freedoms (including mobility rights)

· federal/provincial/territorial issues

· privatization/globalization

· direct funding (self-directed options)

· alternative models of home support provision (e.g., supported living units)

· overall review of disability and income supports

· training of home support workers

· home support employment standards

· gender issues

· Aboriginal/First Nations issues

· employment issues

· abuse

· number of service providers providing home support to one consumer

· Other: please specify and describe . . .

Appendix D: Suggested Format for Focus Groups:

Guidelines for Provincial/Territorial Coordinators

Note: This is only a suggested outline of how you may wish to conduct the focus group. All focus groups should be audiotaped.

Welcome participants.

Introduce self and have participants introduce themselves.

Review the purpose of the National Snapshot project (for example, why people are there, definition of home supportâ€"called home care in some regions, answer questions about the project).

Review group rules: informed consent and confidentiality; audiotaping of session and note taking; location of washrooms; day's agenda.

Show the video Beyond Four Walls.

Following the video, we suggest that the following questions be discussed:

1) What does home support mean to you?

2) How are the issues that were brought forth in the video similar or different to home support issues in our province/territory?

3) How does home support impact upon health, work (including unpaid volunteer work) and citizenship for people with disabilities?

4) Who is currently not eligible for home support?

5) Who is currently being faced with receiving a reduced level of support?

6) Is direct funding/self-management a clear option in your province/territory?

7) When home support services are cut, whose issue is it?

be introduced just before lunch so that group members can think about it over lunch. Please ask participants to respond to the following question in pairs during lunch.

How have you become involved with the "hot topic"?

LUNCH

by mediator, summarizing any known policies for province/territory and a few central ideas raised in the interviews to date (without identifying information).

After lunch, please cover the following areas in the group discussion:

1) What is the "hot topic"? (a description that explores different aspects/debates);

2) How does the "hot topic" impact upon your life specifically?

3) How does this "hot topic" impact people with disabilities' lives in general in our province/territory?

4) What solutions can we suggest that would improve the situation regarding the "hot topic"? (include policy recommendations)

5) How can we strategize to influence policy around this "hot topic"?

6) What three questions should be asked in a national online discussion forum on this topic?

7) How might this topic be demonstrated or discussed on video and who might do this?

Summarize the major findings from the focus group to make sure that the central outcomes are clearly captured and understood.

Explain that information will also be collected through policy documents, interviews and online discussions. May want to inquire to see if participants are interested in the moderator position or other activities such as online discussions on a range of "hot topics." Participants are welcome to review draft report of the focus group for input and clarification before it is posted, to start the national online discussion on the topic.

Thank participants for their contribution.

Note to mediators:

1. Informed consent forms must be collected before any individual participates in any way. Please forward informed consent forms to Maureen Colgan.

2. Audiotapes and written notes of focus group discussions should be couriered to Kari Krogh at Ryerson.

3. Summary reports (2- to 3-page summary report outlining participant description, group dynamics, discussion highlights, major recommendations) should be e-mailed to Maureen with a separate brief note outlining how this issue might be captured on video and who might be involved.

Please complete these activities within two weeks of the focus group.

Project Coordinator	Principal Investigator
Maureen Colgan, Project Coordinator Council of Canadians with Disabilities 926-294 Portage Avenue Winnipeg, Manitoba R3C 0B9 Tel: (204) 947-0303 Toll-free: (866) 947-0303 Fax: (204) 942-4625 E-mail: ccd@ccdonline.ca	Kari Krogh, Ph.D. School of Disability Studies Ryerson University 350 Victoria Street Toronto, Ontario M5B 2K3 Tel:(416) 979 5000 ext. 7909 Fax:(416) 979-5209 E-mail: kkrogh@ryerson.ca

Appendix E: Videotape Guidelines

Thank you for submitting your informed consent form and thank you for agreeing to participate in this project.

You have been asked to demonstrate and talk about how home support services and policies impact upon your life. In particular, the regional coordinator will review with you the highlights of the focus group on a particular "hot topic." S/he will also review the recommendations that focus group participants made about how this topic might be represented and demonstrated on videotape.

You may want to have meaningful locations included in your video clip, such as a library where you volunteer, a place of work, or the inside of your home where you socialize. You could also speak directly into the camera about your ideas. The clip should be 15-30 minutes long. You do not have to edit the tape yourself, but you will be consulted about editing that will take place elsewhere.

A digital video camera must be used and the regional and project coordinators will be able to assist you with technical matters. You can discuss possible content with Kari Krogh or the regional coordinator. You will be asked to submit the digital miniDV videotape and make a VHS format tape to keep for review.

Please try to omit anything potentially sensitive such as the address of your home. If you absolutely need to videotape another person, you must collect a signed consent or release form allowing their image/voice to be used in our project. Once the video clip is submitted, it will be reviewed and suggestions may be made to omit potentially sensitive information before it is shared publicly. The principal investigator or the research team reserves the right to omit such information.

Guidelines

Videotape clips should:

1. illustrate some aspect of one of the "hot topics" explored in this study. (The regional coordinator will discuss the topic that you should work to illustrate and you can discuss with Kari possible ways to illustrate this topic on video.);

2. make use of the medium and show physical space, movement, social interaction, voice intonation etc. and ideally be more than just a "talking head on the screen";

3. allow the general public to see an aspect of the lives of people with disabilities that might otherwise remain hidden from view;

4. be a personal story or a commentary or analysis on home support policy;

5. emphasize the perspective(s) of a person/people with a disability.

Contact Information

Principal Investigator

Kari Krogh, Ph.D. School of Disability Studies Ryerson University 350 Victoria Street Toronto, Ontario M5B 2K3 Tel:(416) 979-5000, ext. 7909 Fax:(416) 979-5209 E-mail: kkrogh@ryerson.ca

Appendix F: Informed Consent Agreement:

Interviews/Online Surveys, Focus Groups, and

Videotape Demonstrations

Information Sheet

You are being asked to volunteer to participate in a research study. Before you give your consent to participate, it is important for you to read the following information, and ask as many questions as necessary to be sure you understand what it is you will be asked to do.

Who is doing the research?

Mary Ennis, CCD Health Reform Committee and Laurie Beachell, National Coordinator of the Council of Canadians with Disabilities (CCD), and Kari Krogh of the School of Disability Studies at Ryerson University. CCD is being funded by Human Resources Development Canada to undertake this review from a disability consumer perspective of home support policies and practices across Canada. Supplementary resources are being provided by the Social Sciences and Humanities Research Council and the Canadian Institutes of Health Research through our association with Dr. Kari Krogh.

What is the project about?

This project is designed to collect information about home support policies and their impacts on people with long-term impairments. The information collected and resulting analysis will emphasize the perspectives of people with disabilities.

How is home support defined in the project?

Home support, as we define it, is personal support that is provided to people in home and community settings to enable people to participate in society. It is not medical services such as physiotherapy. Some regions call it home care or attendant care.

What are the objectives of the study?

To involve users of home support across the country in identifying home support policy issues and in promoting solutions, thereby increasing the participation of people with disabilities in home support policy analysis and development.

What are the project outcomes?

Four project outcomes will result:

· a national database of home support policies including information from each province/territory;

· a multimedia report of the central issues;

· a set of home support policy recommendations; and

· a set of recommendations for increasing consumer participation in policy making.

What kinds of activities are taking place as part of the study?

Research participants may be asked to be involved in interviews, focus groups, online discussions or videotaped demonstrations of issues. Each of the sites will have a regional coordinator to support participants. All of these activities will take place within a 14-month period February 2003â€"March 2004.

What will I be asked to do if I consent to participate in the study?

You will be asked to participate in an interview in person, over the phone or online. The online version will look like an open-ended survey. We anticipate that it may take most participants 1.5 hours to complete this interview/survey.

The questions asked will cover the following areas:

· What is life like for you?

· What role does home support play in your life?

· When do you know home support is working well?

· When do you know that home support is not working well?

· Assessment or reassessment of home support service.

· What home support issues are important to you and why?

Will I be compensated for my time?

We appreciate the time that each person will spend completing a survey and the expertise that it will reflect. Each person will receive $50 for completing the survey.

Will costs related to participation be covered?

If you require accommodations due to disability, please contact the regional or project coordinator. We will make every effort to put these supports in place for you.

What information will be collected?

For each of the six areas above there are a small set of questions. Each question has a place for responses associated with it. Some people will want to fill out the online survey version of the interview by themselves when they have time. Other people may wish to work with the regional coordinator in person or over the phone and have the regional coordinator enter the information onto the form. This will enable people to participate who might otherwise face challenges, e.g., some people do not have computers and some people may find filling in the form inaccessible.

What will the information be used for?

The information will be used to meet the project objectives (as stated above) and may be distributed through community forums, policy reports, conferences and academic publications. The information gathered and the reports generated will be used by the CCD Health Reform Committee and Kari Krogh to educate people who are in decision-making positions regarding home support for people with disabilities. The data, without identifying information that could be used to identify you personally, may be used for future research purposes. Participants are free to participate in the public sharing of the study's final reports.

What are the benefits of participating in this study?

The CCD Health Reform Committee will benefit from having the knowledge generated from this study. You may appreciate an opportunity to work alongside others who are also sharing experiences, analyzing policies and proposing solutions. Personal benefits cannot be guaranteed. All participants will be given the opportunity to have access to the general results of the study in an accessible format once they become available.

What steps will be taken to keep information confidential and anonymous?

Anonymity means that no uniquely identifying information is attached to the data and thus no one, not even the researcher, can trace the data back to the individual providing it. Within this study, we will not be able to provide anonymity; the principal researcher will be able to trace information to its original source.

Confidentiality means that the privacy of individuals will be protected in that the data they provide will be handled and reported in such as way that it cannot be associated with them personally. Several steps will be taken to protect confidentiality. When information is collected from you, your real name will be immediately replaced by a pseudonym. A record of real names and pseudonyms as well as the informed consent forms will be kept in locked files in the principal researcher's office. Only professional transcribers who are unfamiliar with the disability community will be hired. Transcribers, provincial/territorial coordinators and any other research personnel will be asked to sign a confidentiality agreement. The researcher may be required to modify identifying information to protect the identity of participants when reports are being prepared. The project coordinators for this project will receive training in matters related to confidentiality, anonymity and informed consent.

Your choice: Three levels of confidentiality

Some participants will choose to have steps taken to protect their confidentiality throughout the project. Other participants may wish to have their names affiliated with the final report in the acknowledgement section or even with specific pieces of data such as a quotation. We recommend that you wait until you have a chance to review the draft reports before providing consent to have your name used. You will be asked to sign a separate consent form if you wish to have your name used publicly. The principal researcher or the research team reserves the right to not use real names in association with specific data if it appears to not be in the best interest of the project, CCD, Ryerson, the individual or any other participant involved in the study.

We are required by law to inform the appropriate authorities of any behaviors that might be injurious to the participants, or cause reasonable suspicion that a child, elder, or dependent adult has been abused. Research information is not privileged and is thereby subject to subpoena.

What are the risks of participating in this study?

There are several possible risks associated with your participation. Although steps will be taken to protect your identity, this cannot be guaranteed and someone might be able to tell who you are from the type of information provided. Another risk is that discussing certain topics could become upsetting to you. If you feel uncomfortable at any time, you may choose to discontinue participation, either temporarily or permanently.

Can I stop participating?

Yes, you can choose not to participate or you can choose to stop participating either temporarily or permanently. Any decision you make regarding participation will have no unfavorable consequences and will not affect your relationship with CCD, CCD member disability organizations or Ryerson University.

Who can I contact if I have questions?

Project Coordinator/Health Reform Committee	Principal Investigator
Maureen Colgan, Project Coordinator or Mary Ennis, Health Reform Committee Council of Canadians with Disabilities 926-294 Portage Avenue Winnipeg, Manitoba R3C 0B9 Tel: (204) 947-0303 Toll-free: (866) 947-0303 Fax: (204) 942-4625 E-mail:ccd@ccdonline.ca	Kari Krogh, Ph.D. School of Disability Studies Ryerson University 350 Victoria Street Toronto, Ontario M5B 2K3 Tel: (416) 979 5000, ext. 7909 Fax:(416) 979-5209 E-mail: kkrogh@ryerson.ca

If you have questions regarding your rights as a research participant in this study, you may contact the Ryerson University Research Ethics Board for information:

Research Ethics Board
c/o Office of Research Services
>Ryerson University
350 Victoria Street
Toronto, Ontario M5B 2K3
Tel: (416) 979-5042

What should I do if I want to participate in this study?

Please sign the consent form below if you wish to participate in the study. Submit this consent form to the regional coordinator or the principal researcher. You will be provided with a copy to keep.

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Informed Consent Form

My signature below indicates that I have read the "Information Sheet" above in this agreement and that I have had a chance to ask any questions I might have about the study. I understand the benefits and risks to myself. I have been told that by signing this consent agreement I am not giving up any of my legal rights and that I may withdraw at any time. I also understand that I will be given a copy of this signed agreement to keep.

1. Participant Signature

Name of Participant (please print):

Signature of Participant:

Date:

Contact Information for Participant

Address:

Phone:

E-mail:

2. Regional Coordinator (collecting this form)

Regional Coordinator (please print):

Signature of Regional Coordinator:

Date:

3. Principal Investigator

Name of Principal Investigator (please print):

Signature of Principal Investigator:

Date: