Disability-Related Support Arrangements, Policy Options and Implications for Women’s Equality

Disability-Related Support Arrangements, Policy Options and Implications for Women’s Equality
Disability-Related Support Arrangements, Policy Options and
Implications for Women’s Equality
The Roeher Institute
The research and publication of this study were funded by Status of Women Canada’s
Policy Research Fund. This document expresses the views of the authors and does not
necessarily represent the official policy of Status of Women Canada or the Government of
Canada.
February 2001
Status of Women Canada is committed to ensuring that all research produced through the Policy Research Fund adheres to
high methodological, ethical and professional standards. Specialists in the field anonymously review each paper and
provide comments on:
•
the accuracy, completeness and timeliness of the information presented;
•
the extent to which the methodology used and the data collected support the analysis and recommendations; and
•
the original contribution the report would make to existing work on this subject, and its usefulness to equality-seeking
organizations, advocacy communities, government policy makers, researchers and other target audiences.
Status of Women Canada thanks those who contribute to this peer-review process.
Canadian Cataloguing in Publication Data
Main entry under title:
Disability-Related Support Arrangements [computer file]: Policy Options and Implications for Women’s Equality
Issued also in French under title: Services d’appoint pour les personnes handicapées : options stratégiques et incidences
sur l’égalité des femmes
Issued also in print format.
Includes bibliographical references.
Mode of access: WWW site of Status of Women Canada.
ISBN 0-662-65323-8 [print format]
Cat. no. SW21-60/2000 [print format]
1. Women volunteers in social services.
2. Caregivers.
3. Women — Social conditions.
4. Handicapped — Care.
5. Handicapped — Social conditions.
I. The Roeher Institute.
II. Canada. Status of Women Canada.
HV40.46D57 2000
305.42
C00-980437-4
Project Manager: Nora Hammell, Status of Women Canada
Publishing Co-ordinator: Mary Trafford, Status of Women Canada
Editing and Layout: PMF Editorial Services Inc. / PMF Services de rédaction inc.
Translation: Pierre Chagnon; Comparative Read: Christiane Ryan
Translation Co-ordinator: Monique Lefebvre, Status of Women Canada
Translation Quality Control: Line Gingras, Status of Women Canada
For more information contact:
Research Directorate
Status of Women Canada
123 Slater Street, 10th Floor
Ottawa, Ontario K1P 1H9
Telephone: (613) 995-7835
Facsimile: (613) 957-3359
TDD: (613) 996-1322
E-mail: [email protected]
TABLE OF CONTENTS
PREFACE......................................................................................................................iii
ACKNOWLEDGMENTS .............................................................................................. iv
EXECUTIVE SUMMARY ............................................................................................. v
INTRODUCTION........................................................................................................... 1
1. METHODOLOGY...................................................................................................... 4
Review of the Scholarly Literature ............................................................................ 4
Instrument Design ..................................................................................................... 4
Demographic Overview............................................................................................. 4
Case Studies .............................................................................................................. 4
Focus Groups ............................................................................................................ 5
Policy Analysis.......................................................................................................... 5
Expert Reviewers ...................................................................................................... 5
Methodological Issues and Alterations....................................................................... 6
2. CONTEXTUAL BACKGROUND............................................................................ 10
Conceptions of Equality and the Inequality of People with Disabilities
in the Canadian Context........................................................................................ 10
The Disability and Gender Nexus ............................................................................ 12
Relational Approaches to Equality and Equality of Well-Being ............................... 14
Social Policy and Equality in Relationships of Support............................................ 15
3. DEMOGRAPHIC ANALYSIS.................................................................................. 16
Summary of Findings .............................................................................................. 22
4. PROFILES ................................................................................................................ 24
Personal Relationships............................................................................................. 24
Geographic Location ............................................................................................... 24
Employment ............................................................................................................ 24
Communities and Cultures of Support ..................................................................... 25
Service Arrangements.............................................................................................. 28
Disability-Related Support Needs............................................................................ 29
Social Life............................................................................................................... 29
5. POLICY CONTEXT ................................................................................................. 31
In Unison ............................................................................................................... 31
The Canada Health and Social Transfer ................................................................... 32
Regionalization........................................................................................................ 33
Trend Toward Community-Based Service Delivery................................................. 33
ii
Delivery Systems..................................................................................................... 34
Labour Laws ........................................................................................................... 39
6. CRITERIA FOR EQUALITY OF WELL-BEING
IN RELATIONSHIPS OF SUPPORT BETWEEN WOMEN .................................. 43
Promotes Self-Determination................................................................................... 45
Fosters Mutual Recognition..................................................................................... 46
Encourages Respectful Interdependence .................................................................. 46
Ensures Security...................................................................................................... 46
Promotes Citizenship............................................................................................... 47
Democratizes Decision-Making Processes............................................................... 47
7. EQUALITIES AND INEQUALITIES IN RELATIONSHIPS
BETWEEN WOMEN.............................................................................................. 49
Promotes Self-Determination................................................................................... 49
Fosters Mutual Recognition..................................................................................... 56
Encourages Respectful Interdependence .................................................................. 62
Ensures Security...................................................................................................... 67
Democratizes the Decision-Making Process ............................................................ 74
Promotes Citizenship............................................................................................... 78
8. FACTORS THAT ACCOUNT FOR EQUALITY.................................................... 83
Access to Disability-Related Supports and Services................................................. 83
Types of Services/Support Arrangements ................................................................ 89
Organization of Labour .......................................................................................... 98
9. POLICY DIRECTIONS ......................................................................................... 106
Access to Disability-Related Supports and Services............................................... 106
Types of Services/Support Arrangements .............................................................. 107
Organization of Labour ........................................................................................ 108
10. CONCLUSION ..................................................................................................... 110
REFERENCES ........................................................................................................... 113
ENDNOTES ............................................................................................................... 123
PREFACE
Good public policy depends on good policy research. In recognition of this, Status of
Women Canada instituted the Policy Research Fund in 1996. It supports independent policy
research on issues linked to the public policy agenda and in need of gender-based analysis.
Our objective is to enhance the public debate on gender equality issues and to enable
individuals, organizations, policy makers and policy analysts to participate more effectively
in the development of policy.
The focus of the research may be on long-term, emerging policy issues, or short-term, urgent
policy issues that require an analysis of their gender implications. Funding is awarded
through an open, competitive call for proposals process. A non-governmental, external
committee plays a key role in identifying policy research priorities, selecting research
proposals for funding, and evaluating the final report.
This paper emanated from a call for proposals in April 1997 to study the gender dimensions
of the relationship between the changing role of the state, and the changing nature of
women’s paid and unpaid work and their vulnerability to poverty. Researchers were asked to
identify policy gaps, new policy questions or trends, propose frameworks for the evaluation,
analysis and critique of existing policies, or develop pragmatic alternatives to existing
policies or new policy options.
Status of Women Canada funded seven research projects on this issue. They examine
Canadian legislation surrounding women who work at home for pay, work and Aboriginal
women, the social versus the economic gain associated with the social economy, women in
the garment industry, disability-related policies, restructuring and regulatory competition in
the call letter industry, and the relationship between unpaid work and macro-economic
policies. A complete list of the research projects is included at the end of this report.
We thank all the researchers for their contribution to the public policy debate.
ACKNOWLEDGMENTS
A research team at the Roeher Institute conducted the research for this report. Michael Bach
provided project direction. Mary Bunch, Sara Leiserson and Shelley Tremain conducted
interviews and focus groups; they also conducted a review of scholarly literature for the
study. Cameron Crawford acted as Senior Project Consultant, and conducted the
demographic analysis. Mary Bunch drafted the report in collaboration with the research
team.
EXECUTIVE SUMMARY
This report examines equality issues of women with disabilities and the women who provide
supports to them in the context of caregiving relationships. Equality of women within and
outside of the actual relationships is considered. Six criteria are advanced.
•
Promote self-determination.
•
Foster mutual recognition.
•
Encourage respectful interdependence.
•
Ensure security.
•
Promote citizenship.
•
Democratize decision-making processes.
These criteria formed the terms of analysis for investigating the equalities and inequalities
between women with disabilities and the women who provide supports for them. The study
found that while equality in relationships of support is complex and variable, the equality of
women with disabilities, and paid and informal support providers is interactive and tied to
factors within the system of supports.
The access of women with a disability to disability-related supports had an impact on
equality in support relationships (i.e., the degree of access affected women with a
disability, and their paid and unpaid support providers, and the relationship between them).
Similarly, findings show that the types and qualities of the service arrangements used, and
the organization of labour for paid support providers affects equality in a relationship.
Based on these findings, the study puts forward the following policy recommendations.
Access to Disability-Related Supports and Services
•
Increase funding allocated for community-based services to meet demand, provide more
service options and offer higher levels of service.
•
Develop policies that account for a holistic view of health and well-being.
•
Develop coherent disability-related policies based on a social model of disability.
•
Review and redesign assessment procedures to account for consumer self-determination
and differing circumstances.
vi
•
Broaden the scope of eligibility criteria for disability-related supports and services to
account for the complexity in women’s lives, and the social and economic barriers they
face.
•
Ensure direct access to information about the network of supports and services.
•
Put safeguards in place in order to ensure that people can engage in advocacy without
fear of reprisal.
Types of Services/Support Arrangements
•
Increase the availability of direct funding.
•
Provide recipients with some choice and control regarding options for service
arrangements.
•
Address staff labour concerns including equitable wages, benefits and protections, and
ensure these conditions are consistent across the types of service arrangements.
•
Design new service options that offer consumers a choice about where and how they
live; build more accessible housing.
•
Require agencies to allow their clients control and flexibility with respect to which
workers provide them with supports and when.
•
Develop strategies to protect workers from discrimination or unfair firing.
•
Ensure that women with a disability and their staff have conflict resolution choices and
supports.
•
Design service arrangements to allow consumer flexibility.
•
Develop strategies to promote better communication between service recipients and
service providers.
•
Increase the portability of services.
•
Establish a national attendant registry to address difficulties with respect to travel.
•
Give women with disabilities the opportunity to use their own discretion in the hiring of
family members to provide support, under guidelines and mechanisms for protection of
both.
Organization of Labour
•
Revisit the pay scales of support workers and reconsider any pay freezes.
vii
•
Include coverage benefits for worker’s compensation in individualized funding
programs.
•
Allocate funding to train support workers in occupational health and safety, and
professional development.
•
Develop strategies to ensure both consumer choice and control, and worker security.
•
Develop new strategies for collective bargaining that are appropriate to support
relationships.
INTRODUCTION
Equality is a fundamental value of Canadian society, which is given expression in the
Canadian Charter of Rights and Freedoms. The recognition of women’s right to equality
in the Charter and the occurrence of other social developments and events have advanced
the concrete social and economic position of women across the country. Nevertheless,
women throughout Canada continue to face barriers to the realization of their equality.
This includes barriers associated with access to the labour market, poverty, violence, health
risks, discrimination and access to services. This report considers several of these barriers
to women’s equality in the context of the relationships between women with disabilities
and the women who provide paid and unpaid support to them.
This report puts forth a particular conceptualization of equality, based on analysis of the
lived experiences of women with a disability and the caregivers interviewed in the study,
as well as current feminist and disability theory. Equality is framed in the context of
caregiving relationships—both in terms of equality between women in a support
relationship and in terms of the ways that relationship affects women’s equality in the
community and society. The way the term equality is used incorporates concepts of
substantive equality (treating different people differently when necessary to ensure they
enjoy equal advantage and freedom from oppression). The criteria of equality used here are
meant to allow for a diversity of identities, perspectives, values and cultures of not only
White, able-bodied men, but women, people with a disability and others.
This study is timely. Government cutbacks and restructuring have shifted models of service
provision. In recent decades, the character of support relationships between women has
changed. Certain features of current support arrangements have promoted equality for the
women who receive or provide such supports on a paid and unpaid basis; other features,
however, have undermined equality for these women. For example, while women with
disabilities have gained more power in community-based support arrangements, which can
advance their self-determination and independence, increasingly, they rely on unpaid and
underpaid support. This can have a negative impact on the equality of those women providing
that support in addition to the woman with a disability herself. The ways in which inequality
can be reproduced for each of the women involved in a relationship of support, and produced
between them, are becoming clearer. This report aims to illuminate the nature of equality and
inequality in relationships of support and the factors that influence these outcomes.
Some factors are evident in the recent policy shifts at the federal, provincial and local
levels that have been shown to have detrimental effects on the social and economic
position of the women receiving disability-related supports, and the women who provide
them. In communities across Canada, demand for disability-related supports has grown
due to two factors: an increased survival rate of people born with, or who have acquired
complex disabilities, and the increasing number of seniors who view placement in nursing
or retirement homes as a critical last resort and who choose to remain at home with
supports. Despite these demographic increases, funding for disability-related supports has
decreased substantially since 1991 (and especially since 1995), albeit unevenly across the
2
country. For example, the Canada Health and Social Transfer (CHST), which replaced the
Canada Assistance Plan (CAP) and Established Program Funding (EPF), has reduced
transfers from the federal government to the provinces and has made these transfers
unconditional. This change in policy has led provinces to scale back the health and social
services they fund. Many provinces, for instance, have devolved responsibility for
disability-related supports to community boards and local governments. In addition,
eligibility criteria for Employment Insurance have been tightened and the labour force
development boards have been dissolved. Although some groups and individuals have
resorted to soliciting donations in order to fill the resulting funding gap, this “new”
strategy for accessing resources could further entrench a charity-oriented approach to
disability, rather than an equality-oriented one.
In Canada, non-institutional or community-based services have traditionally been delivered
through various charitable and non-profit organizations, which define the services that will
be provided, where, to whom and at what point in time. These service providers develop
eligibility criteria, services, schedules, standards and methods of operation, usually
consistent with government policies and funding allocations. The individual who requires
services has rapidly become peripheral to this process. However, a shift is under way to
support arrangements funded according to an individual’s needs and delivered according to
that individual’s wishes. These individualized support arrangements appear to facilitate
inclusion in mainstream employment, education and employment-oriented training. To
promote inclusion, individualized support arrangements often involve community
development processes to adapt human and organizational resources in varying degrees.
Such arrangements, however, pose many policy dilemmas.
The study combines analysis of policy documents and qualitative data to explore the
complex effects of these changes in service provision on the relationships between women
with disabilities and their paid and unpaid support providers. Within the context of
Canadian social policy, the study investigates how inequality is reproduced through the
current structuring of relationships and how equality could be promoted within them. By
identifying criteria of relationships that foster the equality of women’s well-being and the
broader structural factors that affect the capacity of relationships to meet these criteria, the
study contributes to the advancement of equality for women with disabilities and women
who provide support. The study also points out the ways in which policies fail to address
the tensions between women in these relationships or actually produce polarization. It
culminates in concrete, feasible policy recommendations for innovations in disabilityrelated support arrangements that ought to redress the unfortunate consequences, or
inadequacies, of current policy in this area of social services. Although the research
explores the experiences of women, the findings are also applicable to men.
Chapter 1 of the report describes the methodology, including a discussion of some
concerns that arose during the research process. Chapter 2 reviews critical feminist and
disability theory, outlining the contextual background on which the report is premised.
Chapter 3 provides a statistical overview of caregiving and women with disabilities.
Chapter 4 describes and analyzes the policy context in which women receive and provide
disability-related supports in Manitoba, Ontario and Newfoundland. Chapter 5 provides
3
profile descriptions of the women who participated in the case studies and focus groups,
including some of the circumstances of their lives, their relationship to disability-related
supports and their community contexts. Chapter 6 describes the concept of equality
developed in the report, and six criteria for equality of well-being. Chapter 7 includes the
qualitative analysis of equalities and inequalities in relationships between women, and
Chapter 8 examines factors that account for equality. Chapter 9 points to policy directions
suggested by the research, followed by a concluding chapter.
1. METHODOLOGY
Review of the Scholarly Literature
A review of feminist and disability literature examined conceptions of equality and inequality,
the nexus of disability and gender, relational approaches to equality and equality of wellbeing, and social policy and equality in relationships of support.
Instrument Design
Before the research began, instruments and instrument protocols were designed and pretested. These instruments included two short demographic questionnaires and two interview
instruments. One of each of these instruments was designed to obtain responses from
women with disabilities and the others were designed to obtain responses from the women
who provide support to them. These research tools (which appear at the end of the report as
apendices A to D) were revised and developed throughout the study. An advisory committee
of women with disabilities proved especially helpful with critical feedback and suggestions,
which were incorporated1 into the initial version of the instruments.
Demographic Overview
Statistical analysis for this research was based on the Health and Activity Limitation Survey
of 1991 for Adults in Households (HALS).2 The intention was also to use Statistics
Canada’s General Social Survey (GSS) Cycle 11 on Social Support. However, as the GSS
data set was released much later than anticipated, the analysis has been based on HALS.
The focus of the HALS-based analysis was on situations where persons with disabilities are
receivers of care from women. This includes women with disabilities who received support
from other females.
Case Studies
Ten women with disabilities and their paid and unpaid support providers agreed to
participate as “case studies” to explore their perspectives and experiences with respect to
disability-related supports. In order to reach women for the study, we provided a brief
description of the project to several disability organizations and requested that they
approach any of their constituents who might be interested in participating. When potential
participants requested copies of the interview guides, these were forwarded to them. In
turn, the names and phone numbers of women who were willing to participate in the study
were forwarded to the interviewer. In this phase of the research, criteria were identified
that advance equality in, and through, the provision and receipt of disability-related
supports.
5
Semi-structured, the case study interviews ran about 1.5 to 3 hours in length and were
conducted in Ontario, Manitoba and Newfoundland. The women participating in these
interviews can be categorized in this way:
Women with disabilities
Paid support providers
Professional support providers
Informal support providers
10
10
2
4
All the women interviewed were White, urban and Anglophone.
Focus Groups
Two focus groups were held in Toronto, one with five women with disabilities and the other
with three paid support providers. Each group—whose participants were contacted through
disability, feminist or service-provider organizations, and a network of disability activists in
Toronto—ran for about three hours. The format was relatively structured; the facilitators
introduced questions for discussion by the participants who were also asked to complete
questionnaires, which were modified versions of the instruments that had been used in the
interviews.
Most of the women in the focus groups were White, urban and Anglophone. One woman
was Black and another was First Nations. Two women of colour agreed to participate, but
were unable to attend for personal reasons.
Initially, a focus group of unpaid support providers had been scheduled to take place in
Toronto but was cancelled due to low participant response. It proved to be very difficult
to identify and locate women who provide unpaid support outside of the case study
methodology. In addition, organizations that were approached for assistance had no
criteria with which to identify women who adopt this role.
Policy Analysis
Policy documents produced at the federal level and by the provincial jurisdictions of
Manitoba, Ontario and Newfoundland were collected and analyzed, and telephone
interviews were conducted with policy experts in each of the three provinces.
Expert Reviewers
Three women, one of whom uses personal support, one who works as an attendant and one
who is the mother of an adult with disabilities, were contracted to review a preliminary draft
of the analysis. Each of the women chosen to be a reviewer had skills appropriate for the
task of reviewing analyses of this sort and a broad knowledge of the issues relevant to the
study.
6
From their diverse perspectives vis-à-vis disability-related supports, the women reviewed
the document to assess the relative accuracy of its construal of public policies and program
arrangements, evaluate its presentation of complex political issues and the degree to which it
deals appropriately with sensitive issues, and judge its readability and accessibility. In
addition, the reviewers were asked to comment on the content of the report, given their
personal experiences with disability-related supports. Where appropriate, their input was
included in the analysis.
Methodological Issues and Alterations
The interviews were successful in revealing some important findings about equality in
relationships between women with disabilities and the paid and unpaid women who support
them. However, a number of methodological questions emerged.
Sample Selection
In qualitative research involving a targeted group, it is a fairly common practice to select a
sample through networks of organizations which represent or serve members of the group.
We chose this method for a numbers of reasons: sensitivity to the personal nature of the
subject matter, maintaining response confidentiality, respect for the privacy of participants
and the recognition that women with disabilities have been the objects of a great deal of
research over which they have had no control. We wanted to gain consent from women
through personal contact in which there was no sense of duress.
The sample method effectively addresses the above issues and succeeds in identifying
participants; however, it also shaped the sample in particular ways. The experiences and
perceptions of the participants with a disability (all but one of whom share a link to a
disability or advocacy organization) may differ significantly from women who are not
connected with a disability organization. This has a number of implications. First, while all
disability organizations in Canada and all of their members do not share unanimous views and
experiences, a well-articulated “disability politic” exists in Canadian organizations. Through
their association with disability organizations, the women in this study are likely to be
involved in the discourses of this politic, and may share a common language and (perhaps)
viewpoint regarding the associated issues and concerns. Second, their association with such
organizations indicates access to information and resources that may be greater than that of
many other Canadians with a disability. This may affect their experiences, and their
interpretation of their experiences compared to women who are more isolated from a
disability community.
Insofar as members of these organizations assisted us in selecting women for the study,
partiality might have been a factor here. For although we gave these representatives some
criteria on which to base their selection, they may have used discretion with respect to which
woman would be a good candidate for this study. Further, the women who agreed to
participate might have additional qualities in common not shared with those who preferred
not to participate. For instance, the women who participated may be relatively more or less
satisfied with their support situation and support relationships and, consequently, eager to
discuss them.
7
In some cases, women were not forthcoming with the names of all their support providers.
Typically, the reasons for withholding this information included the providers only working
part time, they were too busy or did not really provide that much support. It is possible that
women were less willing to pass on names of those with whom they have less equitable, or
more difficult relationships for fear of repercussions. Despite extensive explanation, interview
participants maintained an impression that the research was about them personally rather than
about policy questions and concerns regarding support relationships. Thus, some of the
women with disabilities involved in the study may have wanted the interviewer to speak only
with those women they believed would represent them, and their support, in a positive light.
The case study design of the project may have contributed to this perception. Women were
more forthcoming with names following the interviews. Time constraints of the interviewers
made it difficult to conduct additional interviews in provinces outside of Ontario; however
these interviews were later conducted by telephone.
Uneven Representation
Initially, our aim was to interview a minimum of three support providers per woman;
however, this goal may have been too ambitious. In most cases, only one or two paid,
unpaid and professional support providers were interviewed. Our initial intentions needed
to be revised for a variety of reasons. In some cases, a given consumer only received
support from one woman because she received other support from men, had very low
support needs or received insufficient support. In many instances, women did not access
supports from professionals such as physiotherapists or counsellors. Furthermore, only two
professionals who provide such support agreed to be interviewed. Others refused citing
confidentiality concerns. Thus, the analysis focussed primarily on issues experienced by
paid supporters who do not have professional status, that is, attendants and home care
workers. This constraint on the sample actually sharpened the focus of the study, because
the concerns of professionals appeared to differ significantly from that of other paid
workers who cannot appeal to professional status when questions of dispute arise. The
experiences around labour, opportunity and equality of the former group suggest they tend
to be less marginalized and more privileged. In other words, the positioning of both
women with disabilities and their in-home support staff is a critical area of equality, as
both seem to be situations of relative disadvantage.
Representation was also uneven in terms of racial and cultural diversity. While the intention
of the research was to include a diverse sample of women, the actual outcome signalled
limitations in this regard. All the interview respondents were White women; only two of the
focus group participants were women of colour. Methodologically, a more proactive
approach should have been taken, which included outreach to organizations serving people
of colour. In addition, the geographic representation of the sample comprised urban women
entirely; no rural women participated in the study.
Only a small sample of informal support providers participated in the study. In general,
women with disabilities who took part in the case studies did not refer us to women who
provided this kind of support. In some cases, women with disabilities did not refer us due to
the fact that they do not receive disability-related informal supports. In other cases, women
with disabilities were uncomfortable referring us to the women who assumed such a role in
8
their lives, either because they did not want to ask these women to give up more of their
time than they already do or because stresses existed in these relationships—ones that they
did not want explored.
The sample also lacks equal representation of women with intellectual disabilities.
Although organizations, which include and represent this group of women, were contacted
to approach participants, women with intellectual disabilities in only one province agreed
to participate. This is unfortunate, since the experiences and concerns of these women are
likely to differ from those of women with physical disabilities. Indeed, even the two
women with intellectual disabilities who were interviewed had remarkably divergent
experiences with supports; one required and received the least support of any of the
participating respondents and the other required the most support. Thus, the findings with
respect to either of these women cannot be generalized.
Only Anglophone women participated in the study. The original proposal stated that at least
three research participants would be Francophone. However, due to resource constraints,
these interviews were not conducted. While the research team acknowledges the experiences
and viewpoints of Francophone women would have been valuable to the study, it was felt
that the case study sample size was too small to capture any significant cultural difference
between Francophone and Anglophone women.
Methodological Corrections
As outlined above, some methodological difficulties became evident as the study unfolded.
In response, the research team altered the proposed methodology in ways that would address
some of these concerns. The number of case studies was reduced and replaced by focus
groups, outreach methods were altered, and external reviewers who were representative of
women with a disability and paid and unpaid support providers were contracted.
Number of interviews reduced and replaced with focus groups
The proposal stated that 16 case studies would be conducted (including three Francophone
case studies). However, as outlined above, during the interview process it became clear that
some women did not feel they could speak freely in a methodology where their support
providers were also being interviewed. The number of interviews was reduced to 10, and
focus groups were developed to compensate for the six case studies that were not completed.
Outreach methods were altered
In order to select focus group participants, we employed a slightly different procedure than
we had used to conduct the case studies. First, and most important, the personal link
(between women with disabilities and support providers) which may have tainted the
findings in the case studies was omitted in the organization of the focus groups. Support
providers and women with disabilities were approached separately and had no formal
connection to each other. The research team hoped that choosing participants who were
unknown to each other would enable the women to speak more freely about inequity. This
strategy was effective in terms of raising new issues and complexities.
9
In addition, a different outreach method was used. First, disability organizations and
service provider organizations were approached to assist in identifying participants. Then,
women involved in some aspect of an informal network of disability and feminist activists
(including women connected to feminist women of colour organizations) were approached.
These strategies proved to be somewhat effective in diversifying the representation of
focus groups compared to case studies in terms of race, as two women of colour
participated. (A number of other women of colour had expressed interest but were unable
to be there.) It did not succeed however, in increasing the representation of women with an
intellectual disability, Francophone women, rural women or women not connected to
disability organizations. Regarding rural women and Francophone women, it was beyond
the resources available to conduct focus groups in other regions. Furthermore, although the
intent was to hold a focus group for informal support providers, as few organizations (if
any) exist for women in this situation, we were not able to contact such women within the
time constraints of the study. Regrettably, representation from these groups remained low.
External reviewers were contracted
While the use of external reviewers who were representative of women with a disability,
and both paid and informal support providers was not part of the proposal, it became
evident during the drafting of the report that a critique by women in these positions would
be beneficial. A woman from each of these perspectives was contracted to review and
critique the document. As a result, the quality and integrity of the final report improved
considerably. The reviewers were an excellent source of critical feedback, informed the
analysis from the perspective of specific experiences, and acted as a check and balance,
pointing out, and correcting, instances of possible bias.
2. CONTEXTUAL BACKGROUND
Conceptions of Equality and the Inequality of People with Disabilities
in the Canadian Context
In mainstream philosophical theories of distributive justice, equality has been measured in
terms of the possession of (for instance) goods (Rawls), resources (Dworkin) and liberties
(Nozick). Feminist philosophers have argued that this construal of equality is limited
(Young 1990; Benhabib 1987). This is because such a conception of equality does not
account for experiences of oppression (including exclusion and marginalization), which
ought to be factored into any measurement of that value (Young 1990, 1987). Feminists
argue that the construal of equality that mainstream political philosophers have produced
reflects andro-centric biases, which exclude women from achieving the status of full
citizenship and the access to resources and equal enjoyment of social goods (such as mutual
respect) attendant upon it (Lister 1997; Pascall 1993; Young 1990). Feminists who argue in
this way have pointed out that in terms of mainstream theories of social justice, the citizen to
whom these goods and resources are owed is conceptualized as a rational, autonomous
human being who engages in public transactions with others. This allegedly disinterested,
value-neutral conception of the citizen, they argue, actually articulates the interests and
values of non-disabled, White, European men (Young 1987; Markus 1987). As they explain
it, this conception of the citizen fails to accord value to activities in the “private domain” in
which women have traditionally been engaged (e.g., rearing children, doing housework,
cooking and so on).
The recent writing of disability theorists and activists also draws attention to the ways the
dominant notion of the citizen precludes people with disabilities from achieving equality.
Disability theorists have described the ways current architectural design and infrastructural
planning pose physical barriers to the participation in social life of people with disabilities.
Certain cultural norms about bodily functions and appearances dehumanize them, and social
expectations about activity and performance render them as unproductive, non-contributing
individuals (Tremain 1996b; Barnes and Mercer 1995; Silvers 1995; Rioux 1994). Disability
theorists have criticized the ways in which mainstream theories of social justice reinforce
widely held assumptions about people with disabilities whose “handicaps” ought to be
compensated (Dworkin 1981) and which render them deserving recipients of public charity,
rather than full-fledged citizens on whom rights and liberties ought to be conferred.
In order to represent people with disabilities as deserving of public charity, those theories
reproduce pervasive cultural stereotypes of them as dependent, childlike and unable to
provide for themselves. To be sure, much of the theoretical work on social justice has
assumed that people with disabilities are incapable of participating in the labour force, and
thus, contributing to the economy. Rarely has disability been regarded in these mainstream
theories as an economic issue or problematic of citizenship. To the contrary, the equal
distribution of resources (such as disability-related services) to people with disabilities has
been represented in those theories as the satisfaction of “special needs” (Rawls 1993, 1971)
that lie outside of the circumstances of justice. In fact, research has shown that one’s
11
participation in the labour force is determined primarily by one’s access to disability-related
supports, not the nature or degree of the impairment. Paradoxically, an individual must be
designated as “unemployable” in order to qualify for many of those supports.
This misrepresentation of disability and the distribution of resources to people with
disabilities in theoretical work on social justice reflects their marginalization in concrete
social existence. Research shows, for example, that both women and men with disabilities
lack adequate disability-related supports (Fawcett 1996). Persons with disabilities are nearly
twice as likely to be poor (living below the poverty line) than persons who are not disabled
(Fawcett 1996). Surveys and census data suggest that people with disabilities are twice as
likely to rely on the social security system for personal and family income (11.6 percent
compared with 5.8 percent of persons age 12 and over in 1994) (NPHS 1995) than people
without disabilities. Furthermore, they tend to earn less money when employed, with only
7.6 percent making over $30,000 compared to 15.1 percent of people without disabilities
who make this amount or more (Hum and Simpson 1993; see also Statistics Canada 1994a).
The construction of support to people with disabilities as “charity” or as a welfare issue may
have implications for the status of those who provide them with supports and services. As
this study shows, the people (predominantly women) who provide disability-related supports
are precluded from achieving equality by virtue of the limited rewards and the low status of
the work they do. People who worked in this sector when it was more institutionalized, were
conferred higher status, benefits and wages. Currently, employment in this area reaps low
wages, few employee benefits and little opportunity for career development. In addition, the
support worker’s job is difficult, often an invisible social and economic contribution, and
may have lasting impacts on her (or his) health. Although unions represent some support
workers, the work force in this sector tends to be made up of transitional, part-time workers
with limited education, and little or no organized representation. In this respect, they are also
precluded from achieving equality by virtue of the various factors in their lives that might
have situated them in this labour market.
Construing disability-related support as unnecessary to securing equality rights presumes
that gaps left by “public charity” (paid support) can, and should, be filled by “community
charity” (unpaid support). Usually the phrase “community charity” can be read to mean
“women’s unpaid labour.” As the 1996 Census data indicate, women take on the bulk of
unpaid support and other unpaid work in communities across Canada. The census indicates,
furthermore, that caregiving constitutes much of the unpaid work women do (Status of
Women 1998).3 In general, seven percent more women do some form of unpaid work than
men (92 percent compared to 85 percent). While data related to providing care to persons
with disabilities were not available, 42 percent of women compared to 34 percent of men
spent time providing child care, and 19 percent of women compared to 14 percent of men
spent time caring for seniors. Women also devoted longer hours to such activities. Fifty
percent spent over 30 hours a week doing housework or home maintenance in the week prior
to the census, with five percent of this group spending more than 60 hours doing such
activities. In contrast, only 16 percent of men spent over 30 hours a week on housework or
maintenance (Statistics Canada 1998).
12
It is not clear if figures given in the census account for the enormous energy women expend
fulfilling (unpaid) advocacy and management responsibilities. Regardless, it is safe to say
that the inadequate distribution of resources to people with disabilities places a heavy burden
of social responsibility on women, a burden that poses threats to their respective health and
well-being, and their economic opportunities and securities. Thus, the challenge for policy
makers is to recognize the paid and unpaid contributions of women to the support of people
with disabilities, and the resources necessary for them to do so in ways that strengthen their
social and economic position.
The Disability and Gender Nexus
Support service work is also devalued insofar as it is regarded as “women’s work,” that is, it
reflects women’s traditional roles in the domestic domain, as homemakers, caregivers and
nurturers. Despite the fact that “women’s work” requires skills and expertise, it does not tend
to be given professional status. Rather, women who work in occupations (such as nursing,
teaching, secretarial work) that have been traditionally female domains tend to have less
status and receive lower pay than those who work in the domains that have stereotypically
been considered “male.”4 Indeed, due to systemic sexism, women generally are more apt to
work in low-status jobs than are men. Due to pervasive sexism, furthermore, the majority of
women who work in the paid labour force tend to earn less than employed men. In 1998, for
instance, the average annual income for men was just over $34,000, while the average income
for women was about $22,000 (Statistics Canada 2000a). In addition, women tend to be
employed as casual or part-time workers. In 1999, more than twice as many women as men
reported they worked part time (Statistics Canada 2000b).
Because women with disabilities confront systemic sexism, they are further marginalized than
men with disabilities. Women with disabilities are more likely to live in poverty, to have less
access to equitable employment and to education than men with disabilities (or women
without disabilities). In addition, women with disabilities are more likely to be unemployed
than men with disabilities. In 1991,5 for example, 16 percent of women with disabilities were
unemployed compared to 13.2 percent of men with disabilities who were unemployed.
Moreover, when women with disabilities are employed, they earn less money than men with
disabilities. Fawcett (1996) indicates that in 1991 65.6 percent of women with disabilities
earned less than $25,000 annually; in contrast, only 38.4 percent of men with disabilities
earned less than this amount (Fawcett 1996). In this respect, the wages of women with
disabilities are more comparable to the wages of women without disabilities than they are to
the wages of men with disabilities. Both women with and without disabilities earn an
estimated 63 percent of what men earn (Barnartt and Altman 1997).
Due to systemic sexism, furthermore, women with disabilities continue to work in
traditionally gendered patterns of employment. Like women without disabilities, women
with disabilities tend to hold occupations, such as homemaker, secretary, nurse and teacher,
that mimic traditionally female occupations (and roles) which have lower social status
(Roeher Institute 1993d). Because women and their pursuits are systemically devalued,
women with disabilities are less likely to receive sufficient paid and unpaid support than are
men with disabilities (Fawcett 1996).6 When women with disabilities do not receive
13
sufficient support, their health is compromised, their labour force and community
involvement is restricted, and their reproductive choices are put at risk.
The individuals signified as “women” do not constitute a homogeneous group (Riley 1988).
Rather, women are variously positioned along lines of disability, race, class, age, sexual
orientation and ethnicity. Therefore, a host of social circumstances (in addition to those which
compound due to sexism and disability discrimination) must be considered in an examination
of the barriers to equality that confront women with disabilities and the women who provide
them with disability-related supports. While a certain woman might be oppressed vis-à-vis
other women due to systemic disabilism, she might be privileged vis-à-vis some women due
to institutionalized racism (Vernon 1996; Begum 1992; Stuart 1992). While women with
disabilities may be similarly oppressed due to disabilism, some of them may be oppressed due
to heterosexism and homophobia in addition to the oppression they experience due to
disability (Tremain 1996a; Appleby 1994; Hearn 1991, 1988). Furthermore, while women
with disabilities may be similarly oppressed due to disability discrimination, some may also
be oppressed due to systemic racism. Recent U.S. data show, for example, that Native women
and men with disabilities in the United States experience more significant barriers than nonNative women and men with disabilities when they attempt to access employment services
(such as vocational rehabilitation), transportation, job training, employment opportunities and
health care (Pichette et al. 1997).
Since the mid-1970s, most feminist theorists have distinguished between sex and gender in
order to account for the diverse socio-cultural experiences of women (Rubin 1975; see also
Kramarae and Treichler 1985; Haraway 1991). They have argued that the category of “sex”
does not signify some historical, essential nature, which determines women’s experience,
capacity and character, for the biological raw matter of “sex” is always culturally interpreted.
They refer to these historically specific interpretations of biological “sex” as “gender.” That
is, feminists who draw a sex–gender distinction argue against the idea that women share some
common trait that makes them most suited to be nurturers and caregivers. Instead, they argue
that a host of social and cultural expectations and restrictions collude to socialize females to
fulfil these roles, that is, to become nurturers and caregivers. They argue, furthermore, that the
sexual division of labour, which associates women with the private realm and men with the
public realm, is linked to capitalism and the patriarchal order. In patriarchal societies, they
explain, women are restricted to domains in which they must provide unpaid or cheap labour,
and are confined to roles of dependency in order that their reproductive potential can be
controlled.
Like the category of sex, the category of disability has come to be regarded as a social
construct. Until the mid-1970s, the classification of disability was based on medical
diagnosis, pathologized and individualized. Insofar as disability was construed in this way,
people with disabilities were regarded as individuals in need of treatment, rehabilitation and
care. In many contexts, medical diagnosis continues to be the criterion used to determine
whether one should be assigned the disability status that is required to gain access to
programs and services. In recent years, disability activists and theorists have produced a
number of social models of disability and human rights approaches which counter the
dominant medicalized conception. In these, disability is construed as a disadvantage
14
imposed on a person by barriers which prevent equitable participation in society. The social
oppression model of disability is described by Bury (1996: 25).
[D]isability is not the resulting limitations caused by chronic illness,
impairment or trauma, but the way such matters are responded to and
categorized by the wider society. Disability is the product of definitions and
practices that seek to exclude individuals who might be seen to deviate from
the socially constructed norms of the “able bodied”…disability should not be
conceptualized as an individual attribute, but as the result of “exclusionary
practices.”
Relational Approaches to Equality and Equality of Well-Being
To counter the andro-centrism of mainstream theories of social justice and equality, feminist
theorists, such as Martha Minow, have developed relational approaches to the achievement
of those values. Mainstream accounts variously conceive people as isolated bearers of rights
and liberties. By contrast, in feminist relational approaches, people are conceived as
fundamentally connected, and differences between them are (to a significant degree)
regarded as constructed and changeable (Minow 1990). Indeed, many feminists eschew the
notion of rights as masculinist. They maintain that rights-based theories are grounded in
autonomous individualism, which reflects the psychosexual need of male children to
separate from the female maternal body (Irigaray 1985; Gilligan 1982). However, Minow
cautions feminists not to dispense with the notion of rights altogether. She argues that
feminists ought instead to reconceive that value in order to develop a notion of “rights in
relationship.” As she writes (1990: 301):
Autonomy, if defined as the condition of an unencumbered and independent
self, is not a precondition for any individual’s exercise of rights. The only
precondition is that the community be willing for the individual to make
claims and to participate in the defining and redefining of personal and social
boundaries.
She points out, furthermore, that “all rights claims imply relationships among mutually
dependent members of community.” According to Minow, when the social structure in
which rights are distributed is restructured in ways that equalize the social and economic
positions of differently situated people, many of the problems associated with traditional
conceptions of rights can be avoided.
Relational approaches do not rely on a notion of equality of opportunity, where differently
situated people are treated as if they were similarly situated. Rather, relational approaches to
equality hold that the different “situatedness” of people must be acknowledged, and social
institutions (including law and public policy) must be restructured in order that the
disadvantages which accrue to some in their relations with others who are differently
situated can be addressed substantively. To account for the different “situatedness” of
15
diverse groups of people, equality must be measured in terms of people’s enjoyment of wellbeing (Minow 1990; Sen 1980, 1985; Rioux 1994).
Social Policy and Equality in Relationships of Support
As this study demonstrates, relationships between women with disabilities and their paid
and unpaid support providers are ones of mutual dependence and interdependence,
sometimes also involving others such as children, friends, family members and so on.
Thus, the social circumstances, which affect one of these groups of women, have impacts
on the others. For example, some support providers have abused the women to whom they
provide support. While such abuse is unacceptable, regardless of any extenuating
circumstances, research suggests that many of these incidents could be attributed to stress,
frustration or fatigue on the part of the perpetrators which could result from circumstances
such as long or late hours, low pay, insecurity or overwork (Roeher Institute 1995a). Thus,
changing the employment conditions of caregivers would not only benefit them, it may
also reduce the risk of abuse of the women who receive their services. In other words,
when any given woman in this complicated triangle is disadvantaged, the others are often
disadvantaged either directly or indirectly.
Policies affecting women with disabilities in regards to services may affect support
providers also. In addition, policies which affect paid or unpaid support providers may
affect the equality of women with disabilities. While barriers to equality for women in
relationships of support may be a result of policy determinants (such as disability-related
support arrangements and funding) external to the relationships themselves, these
institutionalized inequalities may emerge within those relationships and be enacted by the
particular individuals involved.
3. DEMOGRAPHIC ANALYSIS
The statistical analysis for this research is based on the Health and Activity Limitation Survey
(HALS) of 1991 for Adults in Households.7 It focusses on situations where persons with
disabilities are receivers of care from women. This includes women with disabilities who
received support from other females. It also focusses on situations where people with
disabilities, including females, receive help from community service agencies.
HALS allows for identification of who helped persons with disabilities in everyday activities
(e.g., meal preparation, shopping, personal care, housework, personal finances). Those who
provided support include family members, friends/neighbours and community-service
providers. For family members, the responses can be clustered in the following groups:
•
males receiving help from
• wife/female common-law partner only,
• daughter(s) only or
• wife/female common-law partner and daughter(s);
•
females receiving help from
• daughter(s) only,
• husband/male common-law partner only or
• husband/male common-law partner and daughter(s); and
•
females (over 15 years of age) receiving help from
• community service agencies.
Using this approach, it can be conservatively estimated that 650,000 persons with
disabilities received informal help with routine activities of everyday living from women
in the same family in 1991, or 18.3 percent of all adults with disabilities. The estimated
number of females who provided this help is nearly 720,000 persons.
According to HALS data, there were 182,00008 women over the age of 15 needing help with
daily living activities in 1991. Of these, an estimated 330,000 females (18.2 percent) over
the age of 18 received help from community service agencies. HALS does not distinguish
the gender of these formal care providers.
Tables 1 through 6 show statistics on informal care in Canada. Table 7 looks at the numbers
of women who receive formal care through community service agencies.
Table 1 shows that the largest number of informal female caregivers for persons with
disabilities are wives/common-law partners of males who have disabilities
(247,350 + 144,460 = 391,810 women) followed by daughters of females with disabilities
(184,940 + 105,720 = 290,660 females).
17
Table 1. Persons with Disabilities Receiving Informal Help with One or More
Everyday Activities from Caregivers in the Same Family
Gender, Person
Receiving Help
Male
Relationship of Caregivers to
Person Receiving Help
Wife/female partner only
Daughter(s) only
Wife/partner and daughter
Female
Husband/male partner only
Daughter(s) only
Husband/partner and daughter
Total
Number of People
Receiving Support
250,000
37,000
72,000
Minimum Number,
Female Caregivers
250,000
37,000
145,000
325,000
185,000
106,000
185,000
106,000
975,000
723,000
Source:
Roeher Institute (unpublished) based on HALS 1991.
The research found that HALS does not distinguish on the basis of gender between sibling
caregivers (i.e., brothers from sisters) nor between other family members (e.g., aunts, female
cousins and grandmothers). Nor does HALS permit a distinction between mothers and
fathers who provided support. HALS simply classifies such caregivers as “brother or sister,”
“other relative” and “parent.” Accordingly, the figures obtained from HALS underestimate
the extent of female involvement in informal care within the family, probably by a
considerable margin. Some 141,834 adults with disabilities received help in everyday
activities from one or more “parent” in 1991; 96,790 received support from “brothers or
sisters” and 225,760 received help from “other relatives.” These latter categories are not
mutually exclusive (i.e., a person could have received help from a mother, sister, aunt and
grandmother).
In that HALS limits analysis of female caregiving to situations involving wives/commonlaw partners and daughters, the design of HALS is problematic. However, HALS does
provide some information which can be used to guide analysis using instruments such as the
General Social Survey. For instance, Table 2 shows that there is greater involvement of
females in caregiving for males as they get older than for females. Males aged 55 and older
with disabilities were roughly 50 percent more likely than females in this age range to have
received help from females of the same family in everyday activities in 1991.9
Table 2. Persons with Disabilities Supported by Females of the Same Family,
Showing Gender of Persons Served and Age Cohorts
Age
Group
15 - 34
35 - 54
55 - 64
65 +
Number of Males
Supported
28,000
85,000
82,000
161,000
Percentage of Age
Group Supported by
Females
8.6
17.4
26.0
31.6
Source:
Roeher Institute (unpublished) based on HALS 1991.
Number of Females
Supported
8,500
77,000
54,000
150,000
Percentage of Age
Group Supported by
Females
2.4
15.4
17.1
20.8
18
Table 3 shows the proportion of people with disabilities according to their census family
status who received help from one or more females in the same family. Those most likely to
have received help in 1991 were husbands/male common-law partners, where 29.3 percent
received such support. Some 48.3 percent of all situations in which females provided help in
everyday activities involved husbands/male common-law partners. Female lone parents
were also comparatively more likely than others to have received help from same-family
females (i.e., daughters); this occurred in 20.5 percent of cases involving female lone parents
as compared with the mean of 18.8 percent.
Table 3. Census Family Status of Persons with Disabilities Who Received Help in
Everyday Activities from Females in the Same Family
Census Family Status
Percentage of Persons in
Percentage of All Persons with
Status Group Receiving Help Disabilities Receiving Help
from Same-Family Females
from Same-Family Females
Child
4.0
1.7
Husband/male common-law partner
29.3
48.3
Female lone parent
20.5
5.0
Male lone parent
15.4
0.8
Not a member of a census family
15.3
23.2
Wife/female common-law partner
14.6
21.0
Mean = 18.8
Total = 100.0
Source:
Roeher Institute (unpublished) based on HALS 1991.
Table 4 shows the kinds of activities in which females of the same family provided help to
persons with disabilities in 1991. In all activities where help was needed because of
disability, females of the same family played a major role.
Females of the same family were more likely to be involved in situations where persons
with disabilities needed more help in everyday activities than was available to them in
1991 (Table 5). In effect, the informal care that women of the same family provided often
replaced the support from community agencies. For example, only 4.6 percent of adults
with disabilities (116,220 persons) received help from females of the same family and
community-service providers in 1991 (e.g., voluntary and/or for-profit agencies).10 Some
11.3 percent (398,000 persons) received help from community-service providers and did
not receive help from wives, common-law partners or daughters. In contrast, 13.6 percent
(486,000 persons) received help from such females without any additional help from
community-service agencies.
Of all people with disabilities who reported that they needed more help with everyday
activities than is available to them,11 31.8 percent were helped by women of the same
family. In situations where the level of help was reportedly adequate, women of the same
family were involved in 38.6 percent of the cases.
19
Table 4. Everyday Activities in which Females of the Same Family Provided Help to
Persons with Disabilities in 1991*
Activity
Number of Persons
Helped by Females of
the Same Family
Percentage of All Persons
Helped because of Disability/
Health Receiving the Help from
Females of the Same Family
Meal preparation
190,000
42.8
Shopping for groceries and other
necessities
Everyday housework (e.g., dusting,
tidying)
320,000
43.9
300,000
43.3
Heavy chores
540,000
39.6
Personal finances
210,000
47.9
Personal care (e.g., washing, grooming,
dressing, feeding)
Movement in own residence with some
help of another person
116,000
49.4
54,000
58.8
Movement in own residence only with
8,000
40.4
help of another person
Note:
Everyday activities would include meal preparation, shopping, everyday housework, heavy household chores,
personal finances, personal care (e.g., washing) and moving about at home.
Source:
Roeher Institute (unpublished) based on HALS 1991.
Table 5. Whether Persons with Disabilities Needed More Help in Everyday
Activities, 1991
Activity
Percentage of Situations where Females of the Same
Family Provided Help with Everyday Activities
No additional help needed
More help needed
Meal preparation
18.6
32.9
Shopping for groceries and other
necessities
Everyday housework (e.g., dusting,
tidying)
18.6
37.4
17.2
35.3
Heavy chores
22.9
35.4
Personal finances
17.9
40.2
Personal care (e.g., washing, grooming,
dressing, feeding)
18.1
48.8
Movement in own residence
18.6
47.1
Source:
Roeher Institute (unpublished) based on HALS 1991.
20
Females of the same family were slightly more likely to be involved with persons with
disabilities who were poor than in situations where they were living above Statistics
Canada’s low income cutoff (LICO) in 1991 (19.8 and 18.7 percent, respectively). However,
18.2 percent of females with disabilities who were poor, who needed help, received it from
other females of the same family, compared with only 15.1 percent of females who needed
help and were living above the poverty line. Overall, males were more likely (22.4 percent)
than females (18.9 percent) to have received help from women of the same family in 1991.
For males, about the same proportion received help from females regardless of low-income
status.
Females of the same family were least involved in a caregiving capacity with individuals
who were employed in 1991 (8.9 percent), slightly more involved with job seekers (13.4
percent) and most extensively involved with persons who were not in the labour force
(21.1 percent). Concerning people not in the labour force who received help from females
of the same family, 22.7 percent indicated that one or more barriers and disincentives
prevented them from looking for work (e.g., potential loss of disability income or drug
plan, inadequate training, discrimination). The level of female caregiving involvement was
higher than for those not in the labour force, who did not cite barriers as factors preventing
them from looking for work, where only 18.3 percent were helped by females of the same
family.
In some measure, these findings may be a function of the severity of the disabilities of the
persons supported. Women of the same family were least likely to be involved with
persons who had a “mild” degree of disability (6.8 percent) and most likely to be involved
with persons with a “severe” level of disability (41.6 percent). They were more involved
with persons who reported pain or discomfort than with others (25.5 and 11.6 percent
respectively), and were most involved with persons reporting a severe degree of
pain/discomfort (29.4 percent) than with those who reported only a mild (18 percent) or
moderate degree of discomfort (26.1 percent).
Females of the same family provided support to 31.7 percent of people who used specialized
aids for breathing (e.g., respirator, ventilator, oxygen) than was the case with persons who
did not require such technological support, where only 18 percent received help from
females of the same family. Similarly, females provided support to a large share of people
who needed more in the way of aids and devices for mobility, seeing and hearing than was
available (30.9 percent of cases).12 For persons requiring no such aids or devices, or who
used the devices and whose needs were adequately met, females of the same family were
involved in caregiving to a much lesser degree (16.9 and 16.8 percent of cases respectively).
Some differences are observable in terms of whether persons with disabilities who needed
help in 1991 and who received income through the disability income system also received
help from females of the same family (Table 6). For instance, a comparatively low
proportion of social assistance recipients with disabilities received help from such women
(17.4 percent), roughly similar to the group not attached to the disability income system. In
contrast, the proportion of other program beneficiaries receiving such help ranges from 33.3
to 45.1 percent, depending on the program.
21
Table 6. Proportion of Persons with Disabilities Attached to the Disability
Income System Receiving Help from Females of the Same Family
Income Security Program Status
No income from disability pension or benefit programs
Percentage Receiving Help from
Females of the Same Family
16.3
Canada Pension Plan - Disability benefit
37.8
Workers’ compensation
38.2
Employment Insurance sickness benefit
28.9
Private disability insurance
45.1
Employer-based disability insurance
40.2
Social assistance/welfare
17.4
Veterans pension or allowance
33.3
Source:
Roeher Institute (unpublished) based on HALS 1991.
This difference may be due to the type of family composition of people helped by females
and receiving various forms of income. For example, of all adults with disabilities receiving
income from one or more programs in 1990, 31.4 percent were not members of census
families. That is, they were living alone or with others in non-family situations, such as
shared living arrangements. Depending on the program, the proportion not residing with
census family members ranged considerably, the highest proportion (45.5 percent) being for
those receiving social assistance/welfare. Such individuals were less likely than others to
have had proximity to, and contact with, family members, including women prepared to
offer help with everyday activities.
Table 7 indicates that of the nearly two million women with disabilities in Canada, just over
300,000 receive formal support from community agencies. This means that nearly 1.5
million women with disabilities (82 percent) either receive no support at all, or receive only
informal support from family members and others.
Over half (58 percent) of the women who do receive formal support are women who do not
live with a census family. That is, they either live alone or with people who are not family
members. Thirty-eight percent of the women receiving formal supports live with partners.
The least likely women to receive formal supports are those living with their parents (census
family), making up only 1.4 percent of all women receiving such support. They are followed
by single mothers (5.2 percent).
HALS data suggest that women in some living situations are more likely to access help from
community agencies. Of all female children with disabilities who live with their families,
less than four percent receive agency support. Of those who live on their own, or with
people they are not related to, just over 30 percent receive such support.
22
Marital status also seems to have an impact on access to community agency service. Women
with disabilities, who are married/living with partners are somewhat more likely to access
support than single mothers (nearly 13 percent compared to 11 percent) whether or not they
have children.
Table 7. Census Family Status of Females with Disabilities Receiving Help in
Everyday Activities from Community Service Agencies
Census Family Status
Persons in Status Group Receiving
Help from Community Agencies
#
Female child*
Female lone parent
Female not a member of a
census family
Wife/female common-law
partner
%
Percentage of All Females with
Disabilities Receiving Help
from Agencies
%
5,000
3.7
1.4
17,000
11.1
5.2
190,000
30.9
58.2
120,000
12.7
35.2
Total receiving help from
330,000
18.2
100
community agencies
Note:
* Child refers to a person 15 years or older who lives with her or his census family (i.e., this could be a 25 year
old woman living with her parents).
Source:
Roeher Institute (unpublished) based on HALS 1991.
Summary of Findings
•
Women of the same family are most involved in providing help with everyday activities
to older adults, particularly males (most notably husbands/male common-law partners).
•
A comparatively high share of female lone parents with disabilities receive help in
everyday activities from females of the same family (i.e., daughters). A comparatively
low proportion of these women does not receive support from community agencies.
•
The most usual kinds of help provided include assistance moving about in the personal
home, personal care (e.g., feeding, washing, grooming, using toilet) and personal
finances.
•
In many instances, the help females provide is not augmented by community services.
Over two thirds of women with disabilities do not receive any formal supports from such
services. In nearly one third of cases where people with disabilities need more help than
is available for everyday activities, women of the same family are involved in a
caregiving capacity.
23
•
Women are more likely to be providing help to others of the same family in situations of
poverty than in situations where poverty is not an issue.
•
The help women provide is, in a large number of cases, for persons who are not in the
labour force and for those with a severe degree of disability. In many cases, the
recipients of the care report that one or more barriers, aside from their disability, prevent
them from looking for work.
•
Women are much more likely to be providing support to people who report pain or
discomfort than to people who do not report pain/discomfort. Where pain is an issue,
women caregivers are most extensively involved with people who experience a severe
degree of pain or discomfort.
•
A large share of people requiring assistive technology for breathing are helped in
everyday activities by women of the same family. This is less likely to be the case for
people not using specialized technology to breathe.
•
Women of the same family are more likely to be involved in a caregiving capacity with
people who have less than needed assistive devices for seeing, hearing and mobility,
than is the case with people who either do not need such aids or whose needs have been
adequately met.
•
Women play a major role in providing support to people who receive income through
the disability income system. However, they are less involved as caregivers of people
with disabilities who are social assistance recipients than with others in the social
security system. This finding could be a result of the fact that social assistance recipients
are more likely than others to be living alone or with others in “non-family” situations
and to have comparatively little contact with any family members.
•
Women are most likely to receive formal support from community agencies if they do
not live with their families, or if they are married. The presumption in these cases may
be that they do not have as much access to support from women/girls and other family
members. Women are much less likely to receive agency support if they live with their
parents or if they are single mothers. Perhaps, in the former case, sufficient informal help
is presumed to be available. The reasons why single mothers have difficulty accessing
formal support are not clear.
4. PROFILES
Personal Relationships
The 16 women in the study who were disabled have a variety of personal lifestyles: eight
live with partners (heterosexual marriages, common-law relationships and one lesbian
relationship). In some cases, the partners of these women are disabled also. Eight were
single. Of these eight women, two identified as lesbian. Three of the women had young
children.
Paid and unpaid support providers were more likely than women with disabilities to live
with partners. Of the 13 paid support providers, nine live with husbands or boyfriends, and
seven of these have children. Of the four single women, one lives with friends, and the
others did not discuss her living situation. Two of the four identified as lesbian. All three of
the informal support providers lived with partners.
Geographic Location
All the respondents live in the cities of Toronto, Winnipeg or St. John’s, though some grew
up in rural areas or small towns. While women were not asked why they moved to (or stayed
in) the city, people who are disabled often move to cities so they can access services (Roeher
Institute 1993d: 70). In Newfoundland, in particular, some formal support providers had
moved to the city to find employment. It should be noted, that the findings of this study may
not reflect the situation of rural women who may have quite different access to supports, and
to employment, have different socio-economic concerns and different cultures of support in
their communities. In consequence, rural women may confront different issues of equality
and inequality in their relationships of support.
Employment
Five of the 10 women with disabilities taking part in the case study interviews worked in
the paid labour force.13 Of these, two had short-term contracts, one worked two part-time
jobs (which are equivalent to a full-time job), one worked part time and another was selfemployed. Five of the 10 women were not working. Of these, one was looking for work.
Four of the five were on disability benefits, and the fifth was supported by her husband.
All the working women also worked for disability organizations, or in the disability sector
in some capacity. In fact, many of the women, whether or not they worked in the paid
labour force, were active volunteers at disability organizations and other community
organizations. This can be attributed, at least in part, to the fact that these women were
contacted through the disability network.
The 10 paid support providers were attendants, home-support workers or both. Of the 10, six
worked full time and the remaining four worked part time. They are responsible for a range
of tasks, including assistance with personal care (getting clients out of bed, bathing, dressing
and washroom assistance); with cleaning, cooking, laundry, shopping, yard work, feeding
25
pets and doing minor repairs; with medical care (giving medications, and cleaning and
maintaining medical and assistive devices); and accompanying clients to malls, parks,
swimming pools and elsewhere in the community. Most of these workers do some
combination of tasks in all of these areas, although some were hired for specific tasks (e.g.,
attending a client at a swimming class). Six of the women were hired directly by the women
with disabilities for whom they worked, three worked for public home-care agencies, and
one worked for a transitional housing agency.
One woman, who co-ordinates support arrangements for her sister-in-law, who has an
intellectual disability, was employed full time by her husband in proxy for his sister. She
describes her responsibilities.
I have to fill out the forms of what is the best food for her to eat, like if she
has problems with bowels. I have to make appointments with the dietician,
figure out is she getting enough fibre, stuff like that.... We pay her bills, buy
her clothes, buy her groceries, hire her staff, have staff meetings, keep track
of her medication and how it is working on her. I have to keep track of how
she reacts to it.... She goes to New World fitness on the track and I
accompany her, myself and another staff member. We take her to dinner or
something once a week, dinner in a restaurant. We take her to her family
doctor; her psychiatrist makes a home visit. Or, if she gets sick we have to
take her to emergency or something like that.
The “professional” support providers, a physiotherapist and a counsellor, both work full
time. The physiotherapist works as a course instructor and supervises students in a
physiotherapy learning program out of a university, which is associated with a hospital. The
counsellor is self-employed in her own practice.
Of the informal support providers, three were of retirement age. One of these had worked
previously and the other two had been homemakers. A fourth was employed part
time/occasionally in the paid labour force and was an unpaid homemaker.
Communities and Cultures of Support
The participants in the study lived in a variety of community settings. Gender and other
differences in styles of support varied from community to community. Many of the women
reported that they had strong extended family connections, where family members provided
each other with support regularly. Women with disabilities described family members and
their support providers alike as providers of practical and (in some cases) financial support
for each other. For some of these women, their families comprised their primary
communities. As one woman put it:
Basically, we have a really good family. My father had eight brothers and
sisters and they’re very close. People do a lot of things for each other.
26
Participants described communities which included networks of close friends. Friends were
more likely to provide each other with emotional support, though there were also exchanges
of practical support, such as babysitting, driving and helping with repairs or housework. As
one woman explained:
In my peer community it’s basically just getting together. We’re not a
married group, so it’s just a case of getting together and talking and listening
and helping when needed. Like, I have a car and a lot of my friends don’t, so
I take people places.
Some respondents described their social circles as encompassing churches, neighbourhoods
and the disability community. For instance, at least three women with disabilities reported
that their social circles comprised primarily other people with disabilities and people who
work in the disability sector as attendants or activists.
Although the women were not directly asked about their support relationships with men,
discussions frequently arose respecting gendered styles of support. Many of the women
were eager to discuss their support relationships with men, and the kinds of contributions
men make (or do not make) in their lives and communities. Their interest in this discussion
signalled its importance vis-à-vis their other relationships of support. Thus, a discussion of
men’s roles in women’s lives has been included to locate the context in which support
between women occurs.
Some women reported that men and women provide both the same amounts and types of
support. As one woman remarked:
There is no difference between what men and women do in terms of support.
Husbands assist in rearing children and housework. My son-in-law does
everything from laundry to floors.
In fact, some women received substantial support in their lives from men. Five of the
women with disabilities named a male family member or spouse as a primary supporter.
Interestingly, some women with disabilities reported that due to their disabilities, the men in
their lives have taken on responsibilities that are traditionally female, despite the fact that
this is not considered typical in their communities. As one woman explained:
In my home it’s my boyfriend who cooks and cleans, but in my community
women tend to do it. With my handicapped friends we have some kind of
home care. My female friends are not disabled they just do it. Raise the kids
and do it.
Some women noted a difference between the communities in which they were raised and the
ones in which they now reside. One woman remarked:
Here in St. John’s myself and my husband, he doesn’t try to tell me what to
do, I don’t tell him what to do. But, it’s totally different from the community I
27
grew up in. Where I grew up was a small Christian community where men
were the breadwinners and women looked after the men, put meals on the
table, kept clothes clean, reared the kids.
It should be noted that in some cases the gender equity a number of women claimed existed
in their relationships conflicted with the experiences they actually described. That is,
although some women emphasized that they experience gender equality in the types and the
amount of support they give and receive, they described their activities in ways which
suggested that they clearly carry a much larger burden of support than do the men in their
lives. For example, some participants provide hours of emotional and practical support to
their family and friends; yet, they receive little emotional and practical support in return
from the men in their lives. Furthermore, others claimed that gender did not influence the
way in which tasks were distributed between the men in their lives and themselves.
Nevertheless, they seem to engage in traditionally gendered patterns of support. The reasons
for this discrepancy are unclear. Perhaps women are misreporting the hours of support they
provide. They may, for instance, be so accustomed to providing support that they do not
even think of it in this way. Alternatively, they may not wish to perceive a gender imbalance
in their relationships. Thus, they deny any suggestion of it in order to avoid any disruption in
their lives. Indeed, one respondent became visibly distressed when the gender inequity,
which structured her relationships, became evident as she began to describe her domestic
responsibilities. For not only did she work a 50-hour week outside of her home, she also
devoted another 20 hours a week to her domestic responsibilities. This woman could not
think of a single thing that her husband or children did for her in return.
Some women reported that men and women in their communities provide equal, but
different, types of support. Generally, these women (regardless of whether or not they were
employed) saw their primary roles as homemakers; they viewed their male partners as
breadwinners. These women tended to report contentment with this arrangement. In such
cases, the women reported that the men in their lives sometimes cook or clean; however,
they described the participation of the men in household chores as “helping” them with their
own responsibilities.
In two instances, women reported relationships of support between women as the most
significant in their communities. One woman remarked:
In my life and friends, I would say the majority of people who support are
women. I talk to men friends but not sharing any great moment. Most women
share their big and great moments with other women.
Within the communities studied, there was limited cultural or ethnic diversity. Almost all the
respondents were of European descent. Thus, it might not be surprising that very few
(except respondents in Newfoundland who described strong community support as “typical
Newfoundland style”) described cultural background as a significant factor in their lives.
28
Service Arrangements
In Canada, personal supports are provided under a number of different arrangements.
Fourteen of the 16 women participating in the study received such services. Of the 14
women, seven receive services under individualized funding arrangements (also termed selfmanaged care or direct funding).14 Under individualized funding, persons with disabilities
receive money directly to hire staff with amounts based on an assessment of their need.
People with disabilities who receive supports under individualized funding arrangements
must hire, fire and evaluate their staff, as well as determine in which tasks they will engage,
what their schedules of work will be and how much they will be paid. Some of the women
with disabilities in the study who receive individualized funding managed their workers’
payrolls themselves; others hired banks or accountants to do it. In one case, the money,
which a woman received, was directed to her brother, who worked on her behalf as the
“employer.”
The women who do not receive services under individualized funding had agencies arrange
and pay for their personal supports. Two different styles of agency services were used by
these women. Two of the women were living in transitional housing for persons with
disabilities. Transitional housing is available to disabled people as a temporary option, that
is, to ease their transition from institutional or family living to living independently in the
community. In addition, transitional housing is used by people who have recently become
disabled.
Another two women lived in supported living (or focus) units, which are apartment
complexes with in-house services for tenants with a disability. Three women accessed
services in their private homes through agency outreach services, which receive funding
from the government and are responsible for hiring, evaluating, firing, paying and
scheduling staff for them.
Table 8: Types of Service Arrangements for Personal Support Used by Women with a
Disability in This Study
Service Arrangement
Women
#
Individualized funding
7
Supported living units
2
Transitional housing
2
Agency outreach
3
Only three of the 10 women interviewed for the case studies used professional services.15 One
woman referred our researchers to her doctor (who, for reasons of confidentiality, did not
want to be interviewed). Another woman used the services of a physiotherapist, which she
was able to access at no cost through a training program for students in the local university
hospital physiotherapy program (funded by the Ministry of Health). Other women in the study
who wished to receive physiotherapy were unable to do so, for they would have been required
29
to pay for it. A third woman used the services of a counsellor/therapist, with her own practice.
This woman had accessed these counselling services through personal connections and paid
fees for them herself.
Disability-Related Support Needs
The women with disabilities in the study reported different types of need for disabilityrelated support. Thirteen of the 16 women with disabilities had mobility and agility
impairments and used wheelchairs; most of them required home and vehicle adaptations.
Some also required technical devices such as reachers, lifts, voice-operated computers and
adapted telephones. These women tended to need personal support in tasks, such as getting
out of bed, dressing, bathing and going to the washroom, and assistance in household tasks
such as cooking and cleaning. One woman, with no paid support, said she needed only
occasional support in tasks such as budgeting, learning to cook and managing her diet (she
was diabetic). Institutionalized for most of her life, another woman, with significant
communication and behavioural problems who tends to be aggressive and violent toward
some of her care providers, depends on 24-hour, two-on-one support in nearly all daily
living activities. In addition, she receives support from behaviour and speech therapists.
The degree to which women needed assistance in these areas varied. One woman, for
example, required none of these services. Another used only an hour of assistance getting up
and bathing every day, and a few hours of homemaking every week. Other women required
moderate attendant and home-care services for five to eight hours a day, but could perform
some of these tasks without assistance. One woman, who also had complex health needs,
used 24-hour support. Of the two women with intellectual impairments, one had very low
support needs for a few hours each month. The other depended on 24-hour, two-on-one
support.
Social Life
The respondents who were disabled had varied interests and social networks. The leisure
activities they enjoyed included watching television or listening to the stereo, going to
hockey games, camping, going for walks in the park, attending arts and cultural events (such
as films, plays, musicals and art galleries), playing with their children, hanging out with
family and friends, shopping and gardening. Indeed, some of these women had very busy
social lives and large networks of families and friends. Others, however, reported they did
not have active social lives. These women gave differing explanations for this lack of
activity. Some reported that they were too busy with their work and family responsibilities.
Others noted the barriers in the transportation system and community spaces that limited
their freedom. In addition, one woman said she did not really know how to make friends.
Another woman, who was interviewed by proxy through her brother, had significant
difficulty communicating and relating to others, due to the nature of her impairment, and to
a history of extensive institutionalization.
The paid and unpaid support providers had diverse social lives and levels of activity. They
described enjoying such activities as watching television, going for walks, playing with their
30
children, going to the gym, spending time with family and friends, participating in church
activities, going to concerts, going on picnics, and attending arts and cultural events. Some
had more active social lives and broader social networks than others. Those paid support
providers who did not “get out much” attributed this fact to the demands and hours of their
work and family responsibilities.
5. POLICY CONTEXT
Currently, policies related to disability support arrangements are in flux in Canadian
provinces. Some of the changes affect women’s equality positively; others pose substantial
risks.
In Unison
A recent shift in approach to disability policy in Canada was marked by the Social Union
Framework, signed in 1999 by the Federal/Provincial/Territorial Ministers Responsible for
Social Services.16 In Unison: A Canadian Approach to Disability Issues outlines the
commitment of the ministers to inclusion and full citizenship of people with disabilities.
The Framework is not a policy per se, rather, it sets out a “blueprint for promoting the
integration of disabled persons in Canada...to make disability issues a collective priority”
(p. 5). Based on the principles of equality, inclusion and independence, In Unison
articulates a vision for full citizenship.
Persons with disabilities participate as full citizens in all aspects of Canadian
society. The full participation of persons with disabilities requires the
commitment of all segments of society. The realization of the vision will
allow persons with disabilities to maximize their independence and enhance
their well being through access to required supports and the elimination of
barriers that prevent their full participation (p. 8).
Recognition is given to moving beyond income support to measures that address disabilityrelated costs and barriers in communities and workplaces. It outlines some issues faced by
people with disabilities in the areas of income support, employment and disability-related
supports. For example, in terms of supports, the document identified issues such as the lack
of portability of services, the lack of access to services, high costs and restrictive eligibility
criteria. Policy directions with respect to disability-related supports, include:
•
Promote greater access to support.
•
Separate access to supports from eligibility for income and other programs.
•
Offer greater consumer control, flexibility and responsiveness in support provision.
•
Provide greater assistance for disability costs.
The establishment of commonly agreed principles, vision and policy directions is intended to
lead social policy throughout the country. But it is as yet unclear what the impacts of this new
social union will be on Canadians with a disability. The report was based on consultations
with the disability community, and its recommendations look promising to the extent that
they reflect what the disability community has been calling for in recent decades. However,
32
insofar as there are no mechanisms in place to enforce these principles, it is not evident to
what extent these will be enacted in policy development.
The Social Union Framework indicates new directions in policy related to disability support.
As such, it deserves mention. However, since policies based on the Framework have, for the
most part, not been implemented as of yet, it is difficult to say anything conclusive about the
impacts of this shift on the relationships of support between women. Our research supports
the concerns outlined in In Unison with respect to disability-related supports in terms of the
need for better access, flexibility and portability of service. This suggests that policies
reflecting the commitments of In Unison would promote equality in relationships of support.
The Canada Health and Social Transfer
Until recently, the federal government and provinces shared the costs in areas such as
welfare, social services and vocational rehabilitation programs. The federal government had
subsidized provincial revenues for health care and post-secondary education, and had
financed the direct delivery of services and benefits (such as labour market services) and
Canada Pension Plan disability pensions. The introduction of a new funding arrangement,
the Canada Health and Social Transfer (CHST), significantly changed this state of affairs.
The CHST, which replaced the Canada Assistance Plan (CAP) and Established Program
Funding (EPF), greatly reduced federal cash transfers to the provinces for welfare, social
services, post-secondary education and health-care services. With the CHST, the federal
government gave provinces control over the design and delivery of these services and
programs in exchange for reductions in the money it spends on them. In other words, the
federal government has reduced its involvement in the social policy field, and has given
provinces discretionary powers over which programs and services they will provide.
Provincial governments have begun to overhaul their welfare systems. For example, many
provinces have tightened the eligibility requirements for welfare and other social assistance
programs, some have introduced welfare-to-work and workfare and, in most, labour force
development boards have been dismantled. In a number of jurisdictions, the responsibility to
provide disability-related supports has been devolved to community boards and local
governments.
To be sure, programs which provide income support to eligible persons with disabilities are
more generous than other social assistance programs; however, it is not clear how easy the
access to disability-related income assistance programs will remain. Because the federal
government has relinquished control over which programs and services are offered by
provinces, there are fears that the availability of the social safety net protections that
Canadians value will not be consistent across the country, and that they could be further
reduced. Furthermore, although provinces place an emphasis on disability-related support
arrangements in the community (e.g., home care and attendant services), the actual
availability of these services is not sufficient to meet demand.
The disability community has observed these developments in the health and social service
fields with great concern. There is worry that these policy changes could further entrench
33
poverty for people with disabilities and further entrench a charity-oriented approach to
meeting disability-related support requirements, rather than an equality-oriented one. In
addition, provincial fiscal restraints and an absence of national standards under the CHST
could restrict access by persons with disabilities to the social supports they require to live
securely, participate in communities and workplaces, and make the choices in their lives
they have a right to make. In a study by DAWN Canada (Masuda 1998), women with
disabilities across the country indicated concern about the impact of block funding on
women with disabilities. These women felt the impact of government cuts and fear women
with disabilities will be left in situations that put them at risk of health problems, insecurity
and abuse, because they will not receive the basic supports they need.
Regionalization
One effect of the CHST has been the increasing regionalization of government
responsibility. At the same time as the federal government decentralizes its power to
provincial levels, provinces are decentralizing responsibility to regional and municipal
levels. This move to increased regionalization is a response to budget cuts and is intended
to reduce duplication and waste, and democratize service delivery by putting decision
making in the hands of regional or local boards. These boards, which often include
representatives from communities, are said to respond more appropriately to the needs of
specific communities or regions. The three provinces which provided the geographical
context for this study—Manitoba, Ontario and Newfoundland—are among those that have
made recent transitions to the use of regionalized health boards.
Because these changes are very recent, the actual impacts of regionalization on consumers
of services could not be assessed at the time of this study. However, disability organizations
such as the Council of Canadians with Disabilities (1998a) have expressed concern that
regionalization may compromise access to, and quality of, these services. First, health
boards might make decisions which put pressure on the programs consumers use. Second,
boards have limited or no flexibility to review budgets. Rather, they are allotted certain
funds, and cannot raise taxes in order to gain more. Third, boards are less likely than
government ministries to consider the cost-benefit impacts on individuals and their families
(e.g., the psychological and economic costs) beyond health or taxpayer expenditures. And
fourth, delivery of services through boards may further complicate the already complex
system of access faced by persons trying to locate, and qualify for, services.
Trend Toward Community-Based Service Delivery
One trend in service delivery is an emphasis on delivery outside of hospitals or other
institutional settings. For quite some time, both the independent living and community living
movements have advocated for these changes. The government has responded with initiatives
such as the National Strategy for the Deinstitutionalization of Persons with Disabilities, and
has redirected funds from acute and long-term care facilities to community-based care.
Workers have been channelled into local community-based service agencies. General
hospitals have been converted to long- and short-term health care facilities. The number of
staff in hospitals and other institutions has been reduced. The number of hospital beds has
34
been reduced, and facilities, such as nursing homes, hospitals and community-based agencies,
have been amalgamated (AFÉAS 1998).
Throughout the country, there is concern that increases in the number of available
community-based services have fallen behind the demand. The AFÉAS and others report
that, due to long waiting lists for community-based services and limitations on the
amounts of support that people can receive, many do not receive the community supports
they need. In Newfoundland, for example, government cuts to home-care services led to
the introduction of a cap (which is set at just over $3,000 per person per month) on the
amount of funds allotted for any individual’s community-based service needs. This could
have a number of impacts on women with disabilities. For although women who already
receive more than this will not lose any of their services, those whose service needs are
increasing, or who have only recently applied for service may not be able to access
enough funding to meet their needs. Furthermore, although the funding cap is enough to
pay for approximately 12 hours a day of care (every day) per person, women with
disabilities who need more than a half day of support (every day) will not be able to get
the services they need. Instead, they may have to rely more on family and friends,
increasing their own vulnerability and increasing burdens placed on others in their
community. The options these women have with respect to where they can receive care
may be reduced (i.e., they may end up in less independent, more institutional settings).
The trend toward deinstitutionalization also has an impact on the people who provide
supports. As hospitals and institutions close down, or scale down the services they provide,
some workers become “redundant”; others are transferred to community-based settings,
where they tend to receive lower wages, and have less access to benefits than those in the
more institutional settings. Indeed, community-based, paid support workers, who currently
make less than $6 an hour in some provinces, may have their wages further reduced.
Delivery Systems
Women with disabilities may use a number of different types of disability-related and other
supports, including income support, personal and home support, professional services (such
as rehabilitation and other therapies) and assistive devices programs.
Income Support
There is a complex set of disability income systems, including Canada Pension Plan (CPP)
Disability pensions, provincial social assistance and workers’ compensation. Most of these
programs are designed to cover the costs of disability and compensate for the loss of
earning capacity presumed to arise due to disability. One criterion that has been common
to the various disability benefits is that a given person be considered “unemployable.” For
this reason, social assistance programs directed toward people with disabilities have
seemed more generous than programs aimed at others. That is to say, on the basis of the
presumption that disabled people cannot support themselves, they have been considered to
deserve income assistance. However, this reasoning forces people who are disabled to
trade opportunity and rights in order to access and retain their eligibility for support.
35
Most government income support programs are provided at a provincial level. One
exception, however, is Canada Pension Plan Disability, a federal program providing
benefits to people with disabilities who meet the eligibility criteria. Average CPP benefits
total about $672 per month for eligible adults, and $169 per month for eligible children.
CPP is available to people who have made sufficient contributions in four of the last six
years and who have earned a minimum of 10 percent of each year’s maximum pensionable
earning (in 1998, it was $36,900). To be eligible for CPP, a person must be between the
ages of 18 and 65, have a severe and prolonged disability that keeps the individual from
working on a regular basis, and not receive a retirement pension. Eligibility is determined
through an assessment procedure in which medical professionals review a person’s
disabling condition, the individual’s CPP contributions are checked, and capacity to work
is determined (Abilities 1999).
Manitoba
In Manitoba, provincial social assistance for people with disabilities is provided through
the Department of Family Services, Employment and Income Assistance Division.
Manitoba is unique with its two-tiered income assistance program. The first tier, the
responsibility of the provincial ministry, provides income assistance to eligible people with
disabilities, as well as other categories of people, such as lone parents and elderly people.
Eligibility for assistance under this program is, in part, based on the condition that their
disabilities “prevent them from earning sufficient income to support themselves” according
to the ministry Web site (in 1999). Eligibility (the criteria for which are outlined under
The Employment and Income Assistance Act and Regulation) is determined by a needs test
which compares total financial resources of one’s household to the total cost of basic
necessities (as defined in the Act and Regulation). Consideration is made for basic needs
such as food, clothing, personal needs and household supplies, some medical costs,
housing (rent) and utilities, and some special costs if the person is an adult with a
disability.
Persons with disabilities who do not qualify under employment and income assistance
(e.g., if their disabilities are not deemed to prevent them from earning income) can still
qualify to receive income through their local municipality under the second tier of social
assistance, namely, the Municipal Assistance Program. This program, which provides
people with financial assistance while they seek employment, is administered by
Manitoba’s municipalities, which cost-share expenditures with the provincial
government. In addition, the province (in partnership with the Welfare Reform Branch)
provides program delivery support to municipal administrators, and develops and
supports initiatives to help clients enter or re-enter the labour market. The Municipal
Assistance Program is administered in accordance with The Employment and Income
Assistance Act, The Municipal Act and the Municipal Assistance Regulation.
The current two-tiered delivery of welfare in Manitoba is being replaced by a single-tier
delivery system in Winnipeg. (The majority of Manitoba’s welfare recipients live in
Winnipeg.) This shift is a major component of Manitoba's welfare reform strategy. It is
unclear what the impacts of this policy shift will be on women with disabilities and women
who provide unpaid or paid supports to them.
36
Ontario
In Ontario, income assistance has recently been restructured. In 1998, the Social Assistance
Reform Act (SARA) replaced Family Benefits and General Welfare Assistance. SARA has
two components, the Ontario Disability Support Program Act (ODSPA) and Ontario Works
Act (OWA).
The ODSPA is designed specifically to provide benefits for eligible persons with disabilities:
eligibility is no longer contingent on the fact that one qualifies as “unemployable.” Rather, the
criteria used to determine qualifications as “disabled” are restrictions in ability to function in
the workplace, in personal care activities or in activities in the community. In addition, people
who were already on, or who had been approved to receive family benefits, automatically
retained benefits under the ODSP. If they leave the program for less than a year to earn
income, they are protected and reinstated without medical review when they re-apply. Finally,
people in certain prescribed categories also retained their eligibility automatically, including
people who live in institutions or group homes.
New applicants for income support under this program must be assessed as having disability
status for the purposes of eligibility. The following are the criteria for disability status under
the ODSP.
•
The person has a substantial mental or physical impairment that is continuous or
recurrent, and expected to last one year or more.
•
The direct and cumulative effect of the impairment on the person’s ability to attend to
his or her personal care, function in the community or workplace results in substantial
restriction in one or more activities of daily living.
•
A person with the appropriate qualifications has verified the impairment and its expected
duration, and the restrictions in the person’s activities of daily living.
Personal assessment to determine disability status involves three forms. First, a health status
report of diagnosis and prognosis of disability must be completed by a doctor, psychologist
or optometrist. Second, an occupational therapist, physiotherapist, nurse practitioner,
chiropractor, doctor, psychologist or optometrist must complete an activities of daily living
report (which indicates the impact of impairment on activities of daily living in the home,
community and workplace). Third, the individual has the option to fill out a self-report.
Once eligible, some persons will be subject to periodic medical reviews to maintain their
eligibility for benefits.17
People qualifying for ODSP may receive basic needs allowances and shelter/board and
lodging allowances through the program. The amount they receive depends on their marital
status, the number of dependent children they have, and their family size. The maximum a
single person may receive is $930 per month. People who are disabled but do not quality for
ODSP may apply for the Ontario Works Program. The benefits of Ontario Works are
significantly lower than ODSP benefits. The maximum financial assistance a single person
could receive under the Ontario Works Act is $520 per month. The Ontario government, as
37
part of an effort to contain social assistance costs, instituted a 21.6 percent welfare cut in
1995 for all people who are not disabled. Persons, who do qualify for OWA but not ODSP,
become subject to OWA requirements to participate in job training/job experience programs.
The Employment Support Program, which became fully operational in February 1999, is an
integral part of the ODSP. This program provides some accommodations to persons with
disabilities to assist them in securing and maintaining employment.
The impacts of social assistance reform on persons with disabilities are not yet clear.
Disability organizations have had mixed responses to the new provisions involved in the
ODSP. Some regard the removal of the “permanently unemployable” criterion that existed
under the Family Benefits Assistance as a positive move, since this may increase access to
benefits, given that the notion of “substantial restrictions” is easier to meet than “permanent”
unemployability. Others, however, are concerned that the new provisions could actually
reduce access to benefits, because only those “restrictions” which must be considered a
direct effect of impairment meet the criterion. Those who hold this view argue that this
condition limits the importance of socio-economic factors, such as age, education and
literacy. Furthermore, it is unclear how the qualifier “substantial restriction to areas of daily
living” will be applied, for it could have a wide range of interpretations.
Newfoundland
The Income Support Division of the Department of Human Resources and Employment
provides targeted services and assistance to persons with a disability. Division initiatives
include supports to assist people with a disability to pursue employment opportunities.
Two other support programs for which women with disabilities could be eligible, but
which are not targeted specifically at people with disabilities are the Single Parent
Employment Support Program and Women Interested in Successful Employment (WISE).
These initiatives assist individuals (particularly women) in their transition to employment.
The Single Parent Employment Support Program is a pilot endeavour that helps lone
parents on income support obtain full-time employment and work toward financial
independence. WISE is a community-based organization that offers career exploration
programs for women to help them re-enter the work force.
Home Care and Personal Supports
Manitoba
In Manitoba, services for persons with physical disabilities, those with health needs and
seniors are delivered through regional health authorities, under Ministry of Health
guidelines. One service offered, home care, is described on the ministry Web site as
community-based programs to deliver essential in-home support to people (regardless of
age) who need health services or assistance with activities of daily living. Home-care
services include multidisciplinary assessment of eligibility of services and need for care,
care planning, case management, co-ordination of services, nursing service, therapy
assessment, health teaching, personal care, meal preparation, respite and family relief,
access to adult day care, cleaning and laundry, assessment and facilitation of personal care,
and home placement.
38
In Manitoba, personal supports are delivered through the health authorities in three basic
models. In the first, referred to as a focus unit, a public agency located in an apartment
complex delivers rotation or scheduled supports to tenants with disabilities. In the second
arrangement, known as managed care, agencies deliver outreach services to people in their
private homes or apartments. The third model is individualized funding, delivered through
the Independent Living Resource Centre. In this program, monies are given directly to the
recipients of services, to hire, supervise and manage their own employees. In addition,
personal supports are provided through the ministry’s Long Term Care Division including
the following components: general personal care home services, personal care home services
for persons with special needs and respite care in personal care homes. The goal of longterm care, according to the Manitoba Health Web site (in 1999), is to “increase a person’s
physical, social and psychological functioning to a maximum level to promote functional
independence and improve quality of life or to maintain that level.”
Some services are provided through the Adult Services Branch of Manitoba Family
Services, Community Living Division. The Adult Services Branch is responsible for
programs and resources that support adults with physical and mental disabilities to live in
the community. Services are managed through Supported Living, Day Services and
Vocational Rehabilitation and are delivered through eight regional offices and over 100
external agencies.
Ontario
In Ontario, services are administered under the Ministry of Health and Long Term Care
(MOH/LTC) and Ministry of Community and Social Services (MCSS) guidelines.
Regulations for the Long Term Care Act have now been issued, and its applicability is
increasing for MOH/LTC programs. The Act does not apply to MCSS programs.
Since 1996, home care and related services are delivered directly through a system of 43
community care access centres, or through community agencies. For those over 16 years of
age with physical disabilities, attendant services are delivered by community agencies in
three basic models: supportive housing, attendant outreach services and direct funding.
These models do not involve user fees or co-payments, though consumers pay their own
housing costs. The availability of these services has increased; however, long waiting lists
continue to be an obstacle to consumers.
Supportive housing projects or supportive housing living units (SSLUs) serve clients with
disabilities on a rotational or on-call basis in their own apartments. Under these arrangements,
the building in which clients with a disability reside contains a supported housing office.
Attendant care outreach projects provide prescheduled service to people in their independent
homes or apartments. The SSLU staff are considered to be employees of the agency providing
the service.
Direct funding is administered through the Direct Funding Program of local independent
living centres and funded through the Ministry of Health and Long Term Care. A relatively
new option—direct funding—was introduced as a pilot project and was formalized as an
39
option in 1998. In this model, persons with disabilities receive money to hire, pay and
manage employees to provide services to them.
Newfoundland
In Newfoundland, health services are delivered through regional health boards or regional
health service boards (in Labrador and the northern part of the province). These fall under
the jurisdiction of the recently restructured and newly named Health and Community
Services. The Board Services Branch of the Department is responsible for the provision of
services delivered through the health boards, including the operation of “personal care”
homes and services to senior citizens, the provision of continuing care, mental health
services and public health nursing services. The Policy and Programs Branch is responsible
for the development of all provincial policy and programs related to the mandate of the
Department.
Labour Laws
There does not appear to be a clear and consistent framework for the treatment of persons
who work as attendants or home-care workers. Like all workers, employment standards acts
and human rights acts of their provinces cover them. Some other types of legislation may
also apply. In Ontario, for example, an exemption on the Regulated Health Professions Act
enables attendants to perform tasks that would otherwise be regulated by a health profession.
These and other related protections seem to depend, in part, on the type of support
arrangement under which a person works. There is some question as to how home support
workers are categorized for the purposes of labour laws. They may be considered domestic
labour, companions or regular workers, depending on their job tasks and whether they are
working for individuals in their homes or agencies.
The status of workers in individualized funding situations is less clear than that of agency
and residential workers, because of confusion as to whether they should be considered
employees of the individuals who hire them, or the government that provides the funding.
Generally, it is understood that they are to be employed by the individuals to whom they
deliver services. As such, they fall under the category of domestic worker.
In Newfoundland, some clarification has been made with respect to the identity of employers
under individualized funding or self-managed care arrangements. The policy that clarified this
ambiguity was Bill 56, Act Respecting Home Support Services Provided to Persons in SelfManaged Care. This Bill clearly identified the people who use self-managed care as the
employers of those who provide them with services. As employers, recipients of services are
bound by legislation governing employment standards and human rights.
Disability organizations regard the Bill as a positive move; it eliminates the legal question
with respect to employers of government-funded home workers in a way that maintains the
right to personal choice for persons with disabilities. The Bill also empowers people with a
disability, for it confers power over spending public monies to individuals on the basis of
their daily living requirements. In short, the Bill respects principles of independent living.
40
Organized labour regards the Bill with caution, for it questions the impacts it will have on
the rights of home support workers to adequate pay, benefits and protections. In addition,
labour questions the ability of some persons with “severe” disabilities to take on the role of
employers. The disability community has responded to these concerns. As Mary Ennis of the
Consumer Organization of the Disabled Newfoundland and Labrador (COD) states in a
response to Bill 56:
We value our home support workers and want them to have an appropriate
salary and benefits. Persons with disabilities are upset, for example, that
workers still aren’t in receipt of Workers Compensation Benefits (in this
province). We also respect any worker’s right no matter what his/her
career—to job protection. We also respect their right to seek that protection
from a source of his/her choice—just as we expect Government and the
public to respect our rights to protection and choice (Council of Canadians
with Disabilities 1999).
Employment Standards Acts
All provinces and territories in Canada have their own employment standards act which sets
out regulations for minimum wage, hours of work, overtime, paid public holidays, vacation
pay and termination notice/pay. The acts are similar in each jurisdiction with some variation.
For example, minimum wage is set at $6.00 per hour in Manitoba $5.50 in Newfoundland and
$6.85 in Ontario. For the most part, this applies to all categories of disability-support workers
in these provinces, whether or not they are considered domestic workers. (Historically,
domestic workers were excluded from minimum wage, but currently only Alberta and Nova
Scotia retain this exclusion.) In Manitoba and Ontario (if they work more than 24 hours per
week), domestic workers are entitled to receive the general minimum wage, but they may be
excluded if they work less than this (HRDC 2000a).
The work arrangements of home care and other support workers have an impact on their
rights under the employment standards acts. Information in this regard for Newfoundland
and Manitoba was not readily available, but clear distinctions are made in Ontario where a
person is considered to be a domestic worker when they are:
employed directly by householders, not by a business or agency. A
householder is someone who owns or rents the home where the domestic
work is done. Domestic workers are hired to work in or around a private
home. They do such things as housekeeping as well as helping to care for
children and for people who are elderly, ill or disabled (Ministry of Labour
2000c).
Thus, those workers employed under individualized funding arrangements would be
considered domestic workers, whereas those employed by agencies would not.
Such categorizations affect the rights of workers under the Act, as does determinations of
whether a person works full or part time. For example, domestic employees who work more
than 24 hours per week are covered under minimum wage, paid public holiday, vacation pay
41
and termination notice regulations, but different rules apply to them with regard to hours of
work and overtime pay (they can take paid time off instead of overtime). Domestic
employees, who work 24 hours or less per week are only covered for minimum wage and
termination notice (Ministry of Labour 2000b).
Those employed by a third party, such as an agency, are covered with respect to paid public
holidays, vacation pay and termination notice/pay, but different rules apply with respect to
minimum wage, hours of work and overtime18 (Ministry of Labour 2000b).
Workers who are considered to be companions caring for aged, infirm or ill members of a
household receive the least protection under the law. They are not covered for minimum
wage, hours of work, overtime, paid public holidays or vacation pay. They are only covered
with respect to termination notice/pay. However, it is unclear what type of worker would be
considered a companion, so it is difficult to gauge the impact of this (Ministry of Labour
2000b).
Health and Safety
All three provinces have occupational health and safety acts; however, it is unclear which
types of support workers are included under these acts. Under Ontario’s act, for example,
those who work directly in people’s home are excluded from coverage. Section 3(1)
stipulates that “The Act does not apply to work done by the owner or occupant, or a servant,
in a private residence”(Ministry of Labour 2000a). This seems to imply that workers in
individualized funding arrangements are not covered. SSLU staff, on the other hand,
perform job tasks in people’s private homes, but they work for an agency, and are covered
under the act.
In all three provinces, health and safety legislation stipulates that some workplaces must
establish health and safety committees, or have health and safety representatives to address
concerns such as identifying and evaluating potential hazards, recommending and
implementing corrective action. In Ontario, committees are required to hold meetings
[section 9(33)] and carry out regular inspections of the workplace [sections 9(26),9(27) and
9(28)]. They are expected to receive employee concerns, complaints and recommendations,
discuss problems and recommend solutions and provide input into health and safety
programs.
The degree to which workers who deliver disability-related supports are covered under these
acts depends on the type and size of their workplace. In Ontario and Manitoba, any
workplace that regularly employs 20 or more workers, or has been ordered to by the
Ministry of Labour must have a health and safety committee. In Newfoundland, they must
do so with a staff of 10 or more (HRDC 1999a). When no committee is required, the
ministry responsible for labour may instead require the designation of a health and safety
representative in its place. Health and safety representatives have similar powers and
responsibilities as committees.
Although policy documents were not found that discuss coverage of disability support
workers under health and safety legislation, it may be inferred that those that work in
42
institutional or semi-institutional settings are more likely to be covered than those who are
employed directly by persons with disabilities. This seems to depend on the size of the staff
of the agency, however. In discussions with agency staff, it is evident that, in some
situations, employers may follow the guidelines set out in an act, even though they are not
officially covered by it. Such guidelines include, for example, types of protections that are
factual, such as protections against staff who perform an unassisted transfer of someone over
27 kg (60 lbs).
Workers’ Compensation
The position of support workers vis-à-vis workers’ compensation is not consistent. Attendants
and home-care workers in some situations, in some provinces, are protected under workers’
compensation; others are not. The more institutionalized the service arrangement, the more
likely that staff had workers’ compensation coverage. None of the three provinces studied has
a consistent arrangement for workers’ compensation for attendants in individualized funding
situations. Such an arrangement is often not accounted for in the assessment of need and
allotted funds, and is too expensive for employers and workers to contribute to on their own.
Workers’ compensation is an option in some such arrangements (e.g., the Ontario Ministry of
Social Services individualized funding program for those with intellectual disabilities and
their families). However, as one reviewer of this report suggests, often families do not opt for
such coverage because it reduces the number of hours of service they receive.
In addition, those who work in agencies attached to a building, or who provide outreach,
may or may not qualify for workers’ compensation. This qualification seems to depend on
the degree to which the service was institutionalized, and whether employers made
arrangements to pay into the compensation system.
6. CRITERIA FOR EQUALITY OF WELL-BEING
IN RELATIONSHIPS OF SUPPORT BETWEEN WOMEN
Since equality may be understood in a number of different ways, and this report puts
forward some new approaches to thinking about equality, it is important to explain what
we mean by the term. The analysis is built around a conception of equality of well-being,
focussing on the site of relationships of support between women with disabilities and their
paid and unpaid support providers.
Historically in Canada, according to Justice Beverly McLachlin (1997),19 equality has been
viewed in a number of different ways. She points to recent notions of substantive equality
which aim to create equality, by bringing groups situated differently to a point of fair
competition through such measures as affirmative action. In other words, equality has been
extended from treating everyone the same, to requiring that, when appropriate, different
people are treated differently. In this view, differences are not a reason to deny people the
support they need to make choices and have opportunities. Thus, social institutions need to
be structured to recognize and support people’s differences, address disadvantage and
recognize that people’s needs differ.
Substantive equality forms one part of the model of equality put forward in this report.
Feminist, disability and other theorists have also given consideration to critiques. For
example, that equality means more than possession of goods, resources and liberties, but
also freedom from oppression (Young 1987, 1990; Benhabib 1987). Attention was also
paid to addressing andro-centric biases (Lister 1997; Pascall 1993; Young 1990) and
incorporating female perspectives, culture and values (Young 1987; Markus 1987) in both
notions of equality, and its contexts (i.e., the “private domain”). Similarly, equality was
approached with regard to disability perspectives and experiences (i.e., regard to
architectural and social barriers, social expectations, attitudes and rights to access and
inclusion) (Tremain 1996a; Barnes and Mercer 1995; Silvers 1995; Rioux 1994; Rawls
1993, 1971).
Relational approaches to equality and justice developed by feminist theorists, such as
Martha Minow, in which people are conceived as fundamentally connected rather than
isolated were also applied. Individual autonomy is thus balanced with the understanding
that equality is achieved in the context of relationships between mutually dependent
members of a community. In this light, we shift from an exclusive focus on individual
rights in relation to the broad institutional arrangements of society (i.e., labour market and
income support arrangements) and their own well-being, to understanding that, in some
instances, relationships are the sites in which equality is realized. As such, equality and
inequality may be reproduced through relationships. It is our contention that examination
of how to better secure rights has taken too little account of the personal relationships that
shape the character of daily life for women and for people with disabilities.
In summary, in this report the way the term equality is used incorporates a number of
concepts.
44
•
Equality involves treating different people differently when necessary, to ensure
whatever support they need to be able to respond to opportunities.
•
Equality involves equivalent access to the possession of goods, resources and liberties,
and freedom from oppression.
•
Values attached to equality reflect the experiences, perspectives, values and culture of
not only White, able-bodied men, but women, people with disabilities and others.
•
Equality occurs within a situation of social well-being, whereby people have what they
need for self-determination, democratization and equality of benefit and advantage.
•
Equality is realized in the context of relationships of mutual dependence.
This study looks at personal relationships of support to see how they fit into a framework
for advancing equality of well-being of women in Canadian society—both women with
disabilities and women who provide support. The intention is not to compare the equality
of a woman in a relationship vis-à-vis another woman; nor to argue for the rights of one
over the other. Because equalities and inequalities are sometimes played out in relationship
dyads or triads (or even whole families or communities), equality of well-being sometimes
appears polarized. Indeed, within specific relationships, equality may very well be
polarized. The structures of some relationships may mean that one woman will ultimately
have more power than the other within that relationship and within the broader society.
While our research does look at these issues, the aim is not to draw any conclusive
evidence that women in one position have more equality than women in another position.
Rather, it is to explore the different ways equality and inequality play out within these
types of caregiving relationships and to examine how external factors, such as access to, or
structure of, support or labour issues, or social expectations of women’s roles contribute to
equality in order to devise policies to promote equality for all women to the greatest degree
possible.
Equality of well-being in caregiving relationships refers to a number of things. On one hand,
it’s equality between the specific women involved (whether or not one woman holds power
over the other). It is also about the equality of either woman relative to her social context as
it is affected by participation in the relationship (e.g., whether either woman is marginalized
socially because of her participation in the relationship).
We do not see equality as a simple thing, which one has or does not have. Equality is
complex, with multiple levels and nuances. A person may have equality in some ways but
not in others, or in one moment but not in another. Equality is also, in some ways, relative.
What may feel equal to one woman will not necessarily feel equal to another. Because of
this complexity, the criteria of equality in the relationships analyzed for this study account
not only for the diversity of experiences of women in the study, but also for their
interpretations of their experiences.
45
These criteria were developed primarily through grounded analysis of interviews with
disabled women and caregivers, as well as the Roeher Institute’s previous work on social
well-being (1994), and through the feminist and disability studies of citizenship and equality
outlined above. The understanding and articulation of the criteria in this study are shaped by
the lived experience of the women who gave their time and insight to this particular research
effort.
Six criteria were identified to measure the equality of well-being of the women engaged in a
relationship of support. Again, it should be remembered that these criteria refer both to
equality between women in a support relationship, and the ways being in that relationship
affect their equality in the community and society. The criteria are:
promotes self-determination;
fosters mutual recognition;
encourages respectful interdependence;
ensures security;
democratizes decision-making processes; and
promotes citizenship.
Promotes Self-Determination
Self-determination can be defined as the freedom and ability to choose one’s own goals
and life plan and to make one’s own decisions in pursuit of those ends (Rawls 1971;
Beauchamp and Childress 1983). In order to be self-determining, one must have choices
and opportunities, the opportunity and support to develop one’s capacities, and the means
with which to achieve one’s aspirations. The concept of self-determination must also
encompass a recognition that some people need support through informal and formal
mechanisms (such as supported decision making) in order to make their own choices. Not
all people have the same capacity to express their choices, to manage decision making and
to carry out decisions.
In relationships of support between women, each woman is self-determining if she can make
the choice to participate or not participate in the relationship and can determine the ways in
which she will participate. In addition, a relationship of support ensures that each of the
women engaged in it is self-determining—if it is a relationship in which the women promote
and support each other to make decisions and choices, to achieve their aspirations and to
develop their capacities.
46
Fosters Mutual Recognition
In order to be subjects (rather than objects), humans must be recognized by another (or
others) as distinct individuals, with their own desires, needs and capacities (Beauvoir 1953).
Mutual recognition requires, furthermore, that differences between people which accrue by
virtue of social positioning along lines of race, gender and disability be acknowledged and
respected (Young 1990).
Within relationships of support between women, mutual recognition can be difficult to
achieve. These relationships are conducted in a social context that is structured along deeply
embedded lines of power, which produce cultural practices of discrimination and
humiliation. Women with disabilities have been objectified through the medicalization of
disability, and their self-esteem and sense of personhood have been diminished due to
negative stereotypes that circulate about disability, and about women. They have variously
been perceived as victims, as asexual, dependent, childlike, sufferers, objects of pity and
burdens on society (Fine and Asch 1988; Morris 1991; Wendell 1996). Women who are
support providers have been objectified as nurturers, charity workers, martyrs, servants and
saints. In order to foster mutual recognition, each of the women involved in a relationship
must be treated in such a way that respects their personhood and subjectivity.
Encourages Respectful Interdependence
Equality is promoted within relationships that encourage respectful interdependence.
Respectful interdependence exists in relationships when there is a balance sustained between
independence and interdependence in ways that ensure mutual respect and recognition. This
mutual reliance must be respectful, and promote individual self-determination and independent
action, rather than detract from it. In contrast, a disrespectful or pathological interdependence
may lead to dependencies or co-dependencies that compromise the equality of one or both
parties.
Interdependence implies an exchange. A respectful independence requires a recognition of
the value of different types of contributions within the exchange. For example, provision of
emotional support has value as does financial support.
Ensures Security
Equality requires that people have the security that their basic needs for income, safety and
support will be met, that is, they have adequate income, safe housing, and live and work free
of exploitation, abuse (including vulnerability to abuse) and discrimination. Security includes
access to income support, health care, disability insurance and essential services such as
personal care and transportation. Without personal security, people are not able to survive,
pursue their goals or develop capacities to fulfil various roles in their lives as parent, partner,
worker, citizen, etc. (Braybrooke 1991, 1987; Doyal and Gough 1991).
Security within relationships is promoted when the relationship ensures, and does not detract
from, meeting financial, personal support and other basic needs. That is, women in the
47
relationship support and interact with each other in ways that promote the opportunity and
capacity of each to obtain personal security and not undermine it through abuse,
discrimination or exploitation.
Promotes Citizenship
In 1950, T.H. Marshall defined citizenship in this way.
Citizenship is a status bestowed on those who are full members of a
community. All who possess the status are equal with respect to the rights
and duties with which the status is endowed. There is no universal principle
that determines what those rights and duties shall be, but societies in which
citizenship is a developing institution create an image of an ideal citizenship
against which achievement can be measured and towards which aspiration
can be directed (p. 87).
Marshall’s definition suggested that civil and political rights are not sufficient conditions for
securing citizenship. Rather, Marshall argued that additional social and economic conditions
are required to secure that status (Lister 1997). Some feminist authors have argued that an
understanding of social and economic citizenship must take full account of the particular
barriers women face to full participation in their communities and societal institutions
(Pascall 1993; Young 1990; Karst 1984).
This criterion of equality refers mainly to the effects of participation in the support
relationship on each woman’s equality status in society, rather than a notion of citizenship
within a relationship. In order to promote full citizenship, relationships of support between
women must enable each of them to participate in the community. Women’s participation is
enabled in these relationships if liberty of movement is not restricted (e.g., a woman is not
confined to her home or an institution) and if freedom of speech is not infringed upon (e.g.,
a woman does not face reprisal if she advocates for better wages and working conditions, or
joins a union or other employee association).
Democratizes Decision-Making Processes
Democratized decision making is a process in which diverse perspectives, knowledge and
interests are acknowledged, respected and taken into account. Democratization of decision
making implies a redistribution of resources in order to ensure participation and to build the
capacity of individuals that participation requires (Roeher Institute 1994).
Within the context of relationships of support between women, democratized decision making
is achieved when women communicate effectively with each other, with service agencies and
with employers. This dialogue is democratic when it involves respect for, and accommodation
of, each woman’s perspective, experience, needs, capacities and aspirations. Within the
context of these relationships, democratization can be supported through formal and informal
mechanisms, which ensure that both parties have agency in their communication, and support
or recourse when communication breaks down. In the context of a relationship between a
48
disabled woman and her support provider, democratization implies (for example) that both of
the women have agency to express their respective needs and concerns, but also consider the
needs and concerns of the other.
Democratized decision making between women in relationships of support means more
than effective communication and consideration of the other. It means that both women
have agency, or power, within the decision-making processes. Thus, for example, a woman
with a disability need not rely on the “good will” of her support provider to comply with
her instructions regarding how she wishes to be lifted, for example, but has the power to
assert such demands.
Together, these six criteria provide a guide for examining the nature and extent of inequality
and equality in relationships of support between women with disabilities and their
caregivers. The next chapter turns to that exploration.
7. EQUALITIES AND INEQUALITIES IN RELATIONSHIPS
BETWEEN WOMEN
Accounts provided by women in this study can be analyzed in various ways. In first
interpreting these accounts, the aim was to identify their perspectives on the general criteria
for equality of well-being in the relationships of support they were party to. The previous
chapter defined these criteria. In this chapter, these criteria are used in a fuller examination
of the accounts the women provided. Perspectives of both women with disabilities and their
support providers are presented with respect to each criterion.
Promotes Self-Determination
Women with Disabilities
In this study, relationships were seen to promote self-determination on the part of women
with disabilities when they were able to make choices about, and have control over who
provides them with support, how much support they received, and the manner in which
support was provided to them, and when. This was true in their relations with both their
paid and unpaid supporters. Women with disabilities were also considered to have selfdetermination when their support relationships enabled them to live where they wanted and
do things they liked to do, including engage in meaningful employment and participate in
community life. They were considered to lack self-determination when other people were
making choices for them, or in their “best interest,” or when the support failed to allow
them choices, and to help them realize their aspirations and access opportunities.
The equality of women with disabilities was promoted when they were able to exercise
their right to self-determination by choosing which individuals provide them with support.
Most of the respondents in the study agreed that the most basic condition for equality in
their relationships hinged on their own right to determine with whom they would form
relationships of support. This supported equality for them within the relationship, since
they could choose staff with whom they were compatible and comfortable. It meant they
were more likely to be able to set their own standards and to dismiss workers whose work
was judged to be unsatisfactory. As one woman stated:
I was on government home care. [They sent a] different girl pretty much
every time. They had more don’ts than do’s. “We’re not a Molly Maid
service,” came out of their mouths many times. The way they cleaned was
poor: wouldn’t pick up the chair or garbage can. In terms of cooking, they
would come to make me a week of sandwiches in one night.
The right to determine with whom they engaged in relationships of support was met in some
women’s circumstances. Women reported they were able to realize this by having full
control over the hiring and firing of staff in a self-managed program. Others were satisfied
that they had exercised their right to self-determination when home-care agencies respected
their wishes regarding which workers they preferred, and which ones did not seem suitable.
Still others felt they had little or no control over who they engaged in relationships of
50
support. This was typical in the case of women whose support was tied to their housing.
Those in transition housing and supported housing units/focus units received services from
staff selected and hired by in-house agencies. These staff members served consumers on a
scheduled or rotational basis. In these cases, some may have had moderate control through
participation in hiring committees but, generally, they said they had to accept personal and
home supports by whatever staff walked in the door. In some cases, this was also true for
women who received outreach services in their private homes, depending on the policies of
a given agency.
Women with disabilities also reported greatest satisfaction when they were in control of the
kinds of tasks and varieties of tasks that their in-home support workers perform. Many
wanted to hire the same women to do personal and home care, for this would be more
consistent and less disruptive to their own lives. In some instances, the style of service
arrangements used determines whether or not the woman has this choice. Those who receive
services under self-managed care could choose to have workers perform both sorts of tasks.
Those using agency-managed care were less likely to have this kind of control, or at least
not without some resistance. As one woman remarked:
Having the same people doing personal care and homemaking has been a bit
of a struggle, but I make damn sure to get it. The company gives me a lot of
flexibility with little headache.
Women had very little control in this regard if they lived in focus units or transitional housing,
where agency policy largely determines distribution of job tasks. Moreover, as one woman
explained:
Home care is weird. Someone comes in to wash your hair and it is never the
same person who will give you assistance cooking—so they are paying four
different women, paying for their transportation. They pay them different
rates. Why not pay them all one high rate, and have them do everything?
They shouldn’t segmentize each task—it’s way more expensive that way.
People get offended being asked to open a window because it’s not their job.
Women with disabilities in this study felt that when they did not have these choices, their
activities were limited, their schedules constrained, and their physical and social comfort
and health compromised. Furthermore, they indicated that their dependence on informal
support increased, because they felt forced to rely on others for favours to get the things
they need. As one woman explained:
They had their rules—they could do the tub, but not the tub tiles. They
weren’t allowed to clean mirrors in the livingroom.... I’m sure the task sheet
was done in the early 1900s. They weren’t allowed to pick anything up. They
insisted on using Pledge. I said, “If you’re using furniture polish, you’re
going to lift the doily and clean the whole thing.” So my sister-in-law would
do the dusting.
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Women with disabilities maintain that they can more fully exercise their rights to choose
when they can access services in a number of environments. When they receive services in a
variety of contexts, they avail themselves of opportunities for employment, travel, leisure
activities in the community and personal relationships. Some women wanted to be able to
use services in places outside their own home. Others said they had a difficult time getting
out of their own homes without this portability of services. One woman, who used services
attached to her housing, faced barriers when she wanted to spend time with her girlfriend,
especially overnight. As she explained it:
I have a girlfriend now, I want to stay at her place.... I’d like to stay and my
services are tied to my apartment, not to me. I spent one night at her place and
it cost me $60. I joke that I have to pay for sex, and my partner doesn’t even
get the money. The only way I can get together with her and have some privacy
is to pay someone $60. Sometimes, I may need someone to come in the middle
of the night. My girlfriend is also disabled and she tries to turn me, but it’s
hard for her so we need to have attendants come.
In addition, women with disabilities want to control which tasks a worker does and how they
do them. For example, they want the liberty to choose whether a worker takes them to the
mall or swimming, rather than staying and cooking or cleaning for them. One woman with
this liberty remarked:
It’s self-management home care. What they do—my wish is my command.
Cooking, cleaning, doctors appointments. If I’m out shopping and I need to go
to the bathroom, I can make arrangements for them to meet me and help me.
Women also want the liberty to determine the upkeep of their personal spaces,
I want them to lift the lamp when they dust.
how their personal care will be performed,
My favourite attendant, she really scrubs you down, I prefer to get exfoliated.
Others just soap you up and wipe you down.
and how often.
I work in an office. I need to bathe more than twice a week.
Women with disabilities believe their self-determination is advanced when there is flexibility
in the delivery of their services. They felt rigid care schedules compromised their right to
decide what to do and when to do it. As one woman put it:
No one tells you when you need to go to the can. I don’t see why anyone has
the right to tell me.
52
Furthermore, the women with disabilities in this study wanted the option to revise their
routines, be spontaneous and experience days that are as varied as other peoples, to
whatever extent this is possible. One woman, for example, said she would like to be able to
exchange three hours of cleaning in a week to have an attendant accompany her to the
pool. Another woman said she wanted the choice to sleep in on Saturday. Furthermore,
flexibility in provision of personal supports would allow women to schedule appointments,
meetings or other events, because they could arrange their care around the events that often
(unexpectedly) occur in their lives, rather than attempt to arrange these events around their
care. As one woman, whose services are flexible in this way, remarked:
I get to pick my own days, own hours. Before, if I had a doctor appointment,
I couldn’t put it on a Wednesday. If they came in here, nobody could be here
without me because they weren’t coming here for me. [Agency regulations
required the consumer to be present when home-care staff were in the home.]
Support Providers
Paid support providers were seen to be self-determining when they had choices and input
with respect to whether or not they were working, the kind of work they would do and for
whom they worked. Their self-determination was also realized when their role in the
relationship helped them realize their aspirations and promoted their opportunities.
Similarly, the self-determination of informal support providers in relation to women with
disabilities was promoted when they were able to choose when, how much and what type of
support they provided. Self-determination was restricted when women’s roles as informal
support providers interfered with their own opportunities and realization of their aspirations.
Like women receiving disability-related support, the self-determination of those providing
support is promoted when they are able to determine, for themselves, whether or not they
participate in the relationship. For some paid support providers, this means having choices
about whether or not they work in the paid labour force at all, and having choices and
opportunities concerning the type of work they do. A number of women, for example, felt
they had not freely chosen to participate as a paid support provider within the relationship.
They did not want to be working at all, but were compelled to for financial and other
reasons. As one woman explained:
My husband has had strokes, so I’m the sole provider for myself and my
husband. I went back to work last year.
Other women said they were working in this field because they had limited opportunities,
due to their level of education, access to training or limited opportunity in a chosen field.
One woman, for example, was trained as a dental assistant and preferred to work in that
field, but said there were not sufficient employment opportunities in her region.
In other cases, paid support providers felt that, as much as it was important that women
with disabilities choose who provides support, it was important that, as workers, they be
able to have some choice regarding who they work for; some freelance attendants
53
explained that they chose their employers carefully. They wanted to work for people they
liked who had particular skills as employers. One attendant put it this way:
I know right away from the phone message, by what they say and the way
they say it, if I want to work for them. They’ll say: “Here are the hours I
need, the pay…” [I prefer to work for] someone who recognizes this as my
job, and sees my time as attached to money.
The self-determination of paid support workers is further promoted when they have choices
in the tasks performed for consumers. While most felt that consumer self-determination in
this area was of utmost importance, they also felt that necessary boundaries were pushed in
some circumstances. For example, support workers say they were expected to compensate
when their client/employer received insufficient services. That is, they felt the onus was on
them to respond by being flexible and doing extra tasks. The women who expressed this
sentiment regarded this expectation as unreasonable. Moreover, they found it emotionally
and physically draining to perform extra tasks.
Service providers may compensate for the gap in services proactively (because they recognize
their clients need more support and want to help them out). They did not tend to find this
problematic. Problems arose when they felt they did not have a choice about how to react to a
service gap. To take one extreme example, a woman with a disability, who had developed
aggressive and violent behaviours while living in an institution, received 24-hour personal
support, but was not receiving the behaviour and speech therapies she needed to communicate
in more positive and effective ways. As a result, the women who worked for her were not
only at risk of harm, they were trying to teach her to behave more appropriately, but they had
neither the training, nor the compensation of a professional therapist.
Similarly, the equality of unpaid support providers is affected by the choice they have in the
types and amount of support they provide. As in the case of paid support staff, if the woman
with a disability in the relationship receives inadequate levels of service, they may feel
obliged to compensate. Indeed, informal support providers (partners, families, friends) were
unanimous in the opinion that when the woman in their life received adequate supports, then
they had more choices about when, and how much disability-related support they provided
to her, if any. In some cases, it gave them time to do things for themselves. As one mother
said:
When [she] was here, my hands were tied. Now I have a lot more freedom.
Now I’m getting my house in order.
In two cases, young women with disabilities described the positive impacts on their parents
when they qualified for paid support. One explained:
My mother and father used to provide all my care, but I moved into a place
with services. It reduced what they do.
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The other said that one of the reasons she left home was:
…partly to be more independent, partly to give my family a break. They got
no support while I was at home.
Paid support providers also wanted self-determination with regard to the service arrangements
under which they worked. Some strongly preferred to work directly for employers with
disabilities under individualized funding arrangements, and believed they had made a clear
choice to do so. They felt it gave them control in determining with whom they worked and the
kinds of shifts they took. They adhered to the principles of the independent living movement,
and felt comfortable in a role they believed enabled their employer’s independence. Despite
the fact that they did not have the benefits, support and protections available to workers in
other arrangements, they were willing to forgo these for the control and flexibility that selfmanagement offers.
Not all women working under self-managed care felt they had made this choice, however.
Some felt this work arrangement “ghettoized” them. They claimed to work under it because
they did not have the qualifications or experience to work in more institutionalized settings.
Furthermore, they regarded direct employment as a stepping stone to work in nursing
homes, hospitals or transitional housing units, where they would have a “good job” with
better hours, pay and benefits.
One woman wanted the option to freelance as an individualized funding attendant; however,
she believed she did not have the opportunity to make this choice. In addition, she felt
underemployed as an agency relief worker. She attributed both her underemployment and
lack of access to individualized funding jobs as a result of racism. As she explained it:
I’ve had lots of people who don’t want a Black attendant or that treat Black
and Filipino attendants differently.
Some individualized funding attendants who were White concurred. They reported that they
had more opportunity for choice jobs and shifts than their colleagues of colour.
While most of the women who worked as paid support providers reported they liked their
work, reports varied with respect to the extent of self-determination with regard to the
conditions under which they work (such as hours of work, convenience of shifts and work
environments). The number of hours worked in the home-care profession is highly variable
and depends on a number of factors. In the sample for this study, paid support providers
worked shifts that ranged from full-time, regular work days, to one-, two- or three-hour
shifts, several days a week. In some cases, work hours depended on the choices the workers
made. In others, work hours depended on the service arrangement in which workers were
employed. Women who worked in semi-institutional settings and for home-care agencies
were apt to work more hours for a greater number of clients. Those who worked directly for
women with disabilities were apt to work fewer hours, for one person. Some were satisfied
with the number of hours they worked. For these women, the work hours seemed as if they
55
had been chosen and fit with their respective lifestyles, regardless of whether they worked
full or part time.
Support workers agreed that flexibility in service provision promotes self-determination for
women with disabilities. In addition, some valued the flexibility of their job (when they felt
they had it) for their own sakes. In fact, some support providers worked in this sector
precisely because they want flexibility in their working lives. As one participant in a focus
group explained:
People rely a lot on students, single moms. It’s an employment force where
there’s a high turnover. You take the job because it’s flexible. It’s a two-way
win. By the time you burn out, you have gone to work for someone else, or
back to school.
Not all paid support providers felt they were able to choose how many hours they worked.
Some were dissatisfied because they felt they worked too much; others were dissatisfied
because they felt they worked too little. Those who worked too little wanted more hours for
various reasons. In some cases, the rationale was an economic one: these women needed
more money. In other cases, women simply wanted to “get out of the house more.” In a few
cases, women desired to work more because they perceived that their clients needed more
hours of service, and they wished to fill this need.
Those who felt they worked too much gave a number of reasons for their dissatisfaction. In
two cases, women worked for family members out of a sense of personal commitment and
family obligation. They felt the disabled woman in their life would not receive enough
support if it were not for them, or receive the quality of support they give her. Both of these
women worked significantly more hours than they were paid for. Indeed, they reported that
it was difficult for them to find time for themselves and their families. As one of them
commented:
If she was to get more hours, hire someone else, I’d rather be a backup, she
needs that and most people don’t have that.... I’d rather not work for her on a
scheduled basis, that’s not my job, it’s hard to give her the time she needs,
balancing the kids and everything else.
Another remarked:
I have no time for myself or my family. The situation with my sister-in-law is
too consuming at times. I have no time for my grandchildren. From the time I
get up at 6:30 until 4:00. When I come home from work, I’m doing [the
director’s] paper work and have supper. I don’t even have time to go outside.
On weekends, I often have to fill in shifts, or set up interviews with people for
jobs as respite workers.
Another aspect of self-determination involves not just choices and decision making in the
moment, but access to opportunity, a chance to realize aspirations and develop one’s
56
capacities. For workers engaged in these support relationships, the significance of the work
in relation to future career opportunities is important. Job training provides workers with
skills (and consequently, opportunities) which enhance their self-determination. Women
described a range of training opportunities, to which they have varying levels of access. For
paid support workers, this included on-the-job-training, disability issues/politics, workplace
health and safety, first aid/CPR, crisis intervention/prevention and information about
impairment types. Some women (especially those employed directly by women with
disabilities) said they had no access to any of these types of training except for on-the-job
training. Others said their agency/workplace offered training courses. Some of these were
mandatory. In some cases, they were provided free of charge. In other cases, staff had to pay
for them. None of the women in this sample was paid while taking a training course,
although some agencies apparently do pay for staff training.
Not all attendants felt that formal training was necessary, or even appropriate to do the work
they do. Some individualized funding attendants felt formalized training taught workers an
over-medicalized view of disability and of personal care jobs. They believed that the only
training required to do the job is some direction in safe lifting. Some felt the only one who
really knows what is needed to do the job is the recipient of the services; therefore, she
should give the directions. As one attendant put it:
I only work for people who are self-managed. I don’t think I should need
training outside of what they tell me. I am just hands. They tell me how to use
them.... I do exactly as I’m told, as exactly as they tell me…. For example,
catheterization. I can do it when they direct me, but I don’t know anything
beyond that. It’s the same with medication.
Certain areas of tension arise in promoting self-determination for both women in the
relationship. For example, how far does the control of a woman with a disability go in terms
of her choices about who provides her with support? Likewise, what is an appropriate level
of control for a worker in determining who she will work for? What happens when either
party discriminates on the basis of race, sexual orientation or similar factors?
At what point are a consumer’s demands or a worker’s refusals unreasonable? How do we
work out the need for both women to have choices and control when the control of one
seems to undermine the control of the other? Consumers and workers agree that the selfdetermination of women with disabilities is of utmost importance but, as a protection against
abuse and exploitation of workers, some boundary is needed. How should such boundaries
be defined and enforced, so they promote the self-determination of both?
Fosters Mutual Recognition
Women with Disabilities
Mutual recognition is fostered in relationships when women respect the other woman, and
reject objectification and stereotypes. Ensuring their support providers have such positive
attitudes is given as a reason why consumers want consistent and regular workers they have
chosen. When women have regular workers, they can develop trusting, caring, respectful
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relationships with them. In-home support can be quite intimate. In many cases, support
workers spend hours with a woman in her personal space. Women wanted to receive such
support from women they liked and trusted. They wanted to feel confident they would be
safe and treated with respect.
I get people I get along with. When I didn’t have a choice, a lot of supports
were pretty maternal, that is, they treated me like I was a child and they were
my parent. They would tell me, you need to do this and that—take out the
garbage, clean whatever. I was never happy in those kinds of situations—
with 10 sisters and my parents I already grew up with 12 mothers. I don’t
need another.
When women with disabilities choose who provides support, they are more likely to find
workers they respect and with whom they are compatible. Women’s preferences about how
to keep their home or receive personal care may vary greatly; so too, may the work habits
and styles of support providers. For example, one woman may prefer to instruct her support
providers in their tasks, and be irritated if they make assumptions about what she wants
them to do, and how. As one woman remarked:
I don’t like workers who come in and try to take over, that treat me like I
don’t know what I want.
Alternatively, a woman may find it bothersome to have to tell staff continually what to do.
One woman in the study who articulated this view said:
I would like a staff person to pick something up off the floor, without me
asking—it feels like begging. Or to see the garbage is full and just empty it.
Mutual recognition also involves women’s comfort with the boundaries set in their
relationships with paid support providers. Women differ in this, but what is important is that
their preferences are regarded and respected. Some women think it important to employ staff
with whom they could become friends. As one woman explained:
She’s not only my home worker, she’s my friend. When you are working so
closely with someone you can’t ignore them as a person.
In some instances, personal compatibility with the worker was more important to a woman
than the worker’s skills. One woman put it this way:
I’m not fussy about housework because my husband can pick up if they don’t
have good housekeeping skills. What I’m fussy about is how they treat us.
Some women, however, did not believe that friendship with their workers was a priority. As
one woman put it:
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Some of my friends say you can’t become friends with staff: they just work for
you. [One friend], she’s had the same woman for 13 years and they don’t say
more to each other than “fluff the laundry.”
Moreover, some women do not have a strong preference one way or the other in regard to
friendships with their staff; they point to personal relationships with some staff, but not
others, and satisfaction in either instance.
Women with disabilities felt the attitudes of their workers have toward people with
disabilities, in general, and toward them, in particular, affect both the equality in these
relationships and the extent to which they are satisfied with how their services are delivered.
As women with disabilities explained, they want to receive services from workers who
acknowledged their independence and capabilities, and valued these. As one woman put it:
She knows that I can do what I can do, I know that [she] knows her work; she
doesn’t try to take over me or my child. If he needs something she does it if I
ask her too, but she doesn’t do it automatically. I like that. She’ll just offer
me her hand, doesn’t force help on me.
Many of the women interviewed felt their support providers respected their independence.
Some attendants expressed support for the values of independent living. Others valued
independence for religious or moral, rather than political reasons. There seemed to be
evidence that many support workers respect the equality of their clients. As one attendant
said:
Doing the best job you can, to meet each person’s needs is my goal; to
promote independent living and meet these goals. To meet everybody’s needs
and expectations.
Workers and consumers alike perceived a direct relationship between the way supports are
provided (including the attitudes of workers) and the independence of women with
disabilities. One woman described how her values regarding independence affected the
way she performed her job.
I promote for her to be more self-sufficient. For example, I lowered the
microwave so she could reach it and wouldn’t have to rely on others. Move
the oxygen closer to the bed so she doesn’t need [her partner] to get up....
Maybe there’s a lot of things she can do that she isn’t doing because we
aren’t allowing her.
While respondents in the case studies frequently expressed satisfaction with the attitudes of
their staff, most reported that, at some point, they had worked with staff who were
patronizing or disrespectful. The women with disabilities in the case studies described
instances in which staff had treated them like objects of inconvenience, became irritated
when they expressed preferences about the way tasks were to be completed or made choices
about the way supports were provided, and spoke about them disrespectfully to others when
59
out in community spaces. Staff attitudes of this sort had negative impacts on the women
with disabilities who participated in this study. These ranged from irritation to fear to
marginalization.
One woman, I think it was her style, she would rush in, move around rooms
very quickly and stand there if I was too slow in indicating what I wanted.
She made me very uncomfortable, my heart raced whenever she came...but I
didn’t want to say anything. I didn’t want to know what she would do if she
got upset with me.
Women with disabilities also felt more satisfied with support providers who had an
understanding of disability discrimination, and an awareness of disability issues. Some
expended the energy to provide their staff with this education informally and through formal
workshops. They believed that when the people who assist them have this knowledge they
are more apt to respect the choices of their employers and promote their independence, and
better facilitate their involvement in the community. In some cases, politicized staff made
considerable effort to change community attitudes on and off the job. One support worker,
who made efforts in this regard, said:
I try to lessen discrimination. If we go to the mall and someone is parked in
the blue zone, we tell them they can’t park there. Sometimes they’ll tell you to
F-off. I chased one fellow one time at the grocery store.
Support Providers
Like women with disabilities, paid support providers believed that equality was promoted
when their relationships fostered mutual recognition. Paid support providers wanted to be
liked, respected and appreciated by the women to whom they provided services, and in
society in general. Some attendants explained that in society they do not have high status as
workers—a view they feel is linked to the low pay and insecurity of their jobs and to
disability discrimination. As one attendant stated:
I can’t handle my identity as an attendant. I find it difficult to talk about my
work with other people. It’s a lack of understanding. It’s the stigma
associated with disability, with personal care. People treat you as a saint or
as a shit-wiper.
As the woman above suggests, the low social status may be linked to negative public
attitudes about people with disabilities. Negative social attitudes toward both groups of
women may be reproduced or expressed within their relationships to each other.
Paid support providers report that, at times, their jobs required them to put aside their sense
of personhood. While they said this was an appropriate expectation as a protection against
abuse, they found it difficult and dehumanizing. They described their work as difficult
psychologically because it required them to negotiate the balance between friend and
employer, and to leave their troubles or bad mood at the door. One attendant explained:
60
I come in sometimes and I become a totally different person. I’m in a bad
mood, but I’m being perky: “Hi, how are you?” It’s not their fault that they
had to [call me in to work because they had to] pee during a snowstorm and
the transit was stopped.
Having emotional reactions or sexual reactions was clearly not appropriate. However, support
providers pointed out that sometimes things occur during caregiving that may trigger such
reactions. In a discussion about being asked to provide sexual assistance to consumers (such
as masturbation assistance or putting lovers in bed together) one woman said:
No one ever talks about the attendant or what her sexuality is in relation to
what is going on in the room. I feel totally exploited half the time. They
forget about our sexual presence in the room. There may be a problem
socially with people with disabilities not being seen as sexual beings, but
not by attendants. We know. We come into that room with our own
particular sexuality and the various states that may be in. I have assisted
people by calling someone, by getting them ready for sex. Certain times in
my life I was having my own sexual issues and I wanted to be able to pull
back. I have to come through and challenge myself.
Some felt objectified as a resource for independence for women with disabilities, in acting
as her “arms and legs.” Others said they felt objectified when consumers kept them around
even though there was nothing to do. Some consumers with individualized funding felt
pressured to do this because they believed they would lose funding they might need later if
they did not use up all their hours when they had them.
Attendants did not feel there was much that could be done about these kinds of realities.
They felt they were, at least in part, a necessary downside of the job. However, they stressed
that what they wanted was consideration on the part of the women they serve about the
impact of such decisions on the support provider. They wanted the women who employed
them to speak to them respectfully, and to see them as real people with their own issues and
concerns. Attendants placed great value on working for people who were considerate. As
one attendant said:
They want us to have disability consciousness. I want them to think about
who we are as attendants. What brings us to work. I’d like them to think
through who their employees are, why they are there.
Support workers felt that the social attitudes of the women for whom they worked affected
the recognition they obtained in the relationship. In this respect, racism emerged as a
significant problem. Some support workers felt the security of visible minority staff was
compromised due to overt, or covert, racist attitudes of some recipients of services. 20 One
Black support worker reported that, on two separate occasions, clients (who did not want to
receive services from a Black woman) had falsely charged her with abusive behaviour. She
described one of these incidents in this way.
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Several times I had conflict because of race. In one example, I was working at
this place. I went in to give this lady her shower. I did everything. I was about
to take her out of the bathroom. I was about to take her into her bedroom to
dress her. She always was picky with Black people. She just started saying you
f’n this; you f’n that [cursing and racial slurs]. So I covered her, and left her
in the bathroom. I got someone to come with me that I work with. I ended up
leaving and the other girl took over. She wheeled herself into the living room.
She had banged herself on something. The other girl dressed her. Lo and
behold, I was at home one day and a policeman came in. I was charged, that I
had grabbed her.
The agency for which the attendant worked had believed and supported her because the
consumer in this situation had previously demonstrated racist and abusive behaviour toward
attendants. In both cases, the charges were dropped because the women who made the
allegations did not participate in the conflict resolution process, nor did they show up for
court. The attendant felt, however, that insofar as the resolution and trial processes were
aborted, she did not have the opportunity to clear her name. She believed that because her
name had not been cleared, she lost shifts in her current workplace and future employment
opportunities elsewhere. In addition, she spent thousands of dollars to hire lawyers, which
she could not afford.
A White attendant remarked that the women of colour with whom she worked were not
treated fairly. She suggested that some employers, aware that this group of workers is
marginalized and underemployed, capitalize on the opportunity to fill their “difficult-to-fill”
shifts (such as one-hour, early morning or overnight shifts). She remarked that it was not
uncommon for White women to work all the “choice” shifts and for women of colour to
work what she termed as the “shit” shifts. As she explained:
There are a couple of places where Black women are not securely working.
They don’t always bring forward complaints because they are so vulnerable.
I believe some of my employers take advantage of this. A good portion of
people I work for who have a “shit” shift (one hour, or night shift that could
change between 10 p.m. and 1 a.m.) [fill them with women of colour]. In
these shifts, you are cabbing it, so you lose any profit, but you do it so you’ll
get called the next time.”
Another factor that affects relationships of informal support between women is the degree to
which women who provide support are recognized and compensated. Recognition takes a
number of forms. The simplest and most obvious form of recognition occurs when others
notice a woman’s contributions to her community and express their appreciation. In
addition, recognition of a woman’s contributions may involve the sort of exchange of
supports (I do this, and you do that), which is part of membership in a community. In more
formal terms, women’s unpaid contributions to the well-being of their communities could be
recognized through social policy and the various taxation systems.
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Encourages Respectful Interdependence
Women with Disabilities
Relationships promote equality when they encourage a respectful interdependence. People’s
independence and autonomy occur within the context of communities and relationships with
others. Women with disabilities and support providers rely on each other for different things,
and it is a criterion of equality for both that their interdependence promotes, rather than
detracts from, individual self-determination and independent action.
The relationships women with disabilities have with paid support providers has an impact on
many relationships in their lives. Consumers report that when they received adequate paid
support, they were not required to rely on friends and family members in ways that were not
comfortable for them. Thus, by virtue of their relationships with support providers, they
were able to have more equitable and fulfilling relationships with family members and
friends. One woman described how having sufficient paid support enhanced her selfdetermination regarding the kind of support she receives from others and reduced her
dependence on them.
In terms of personal care, all those needs are met by my workers in my home.
It’s very difficult for a 30-year-old woman to say to her mother: “I need a
bath now.” It’s good to have those supports outside the family. Not that
family is not a good thing. In order to have your independence you need the
help of others.
Those who did not receive the paid support they needed described how the resulting
dependence on their spouses, family and friends compromised their equality in these
relationships. One woman explained that she had lost friends because she had too
frequently asked them to help her with personal care, such as bathing.
Friends jump in regularly and help me get more frequent baths (bathe me)....
I’m not satisfied with it. I’d rather have it as part of my paid routine. I don’t
feel it’s fair to count on my friends. I’m not comfortable with it, but have no
choice. It has affected my friendships. Some friends I have lost—they don’t
feel it’s their role and they are right.
Similarly, respectful interdependent relationships with informal support providers
strengthened their relationships with formal support providers. In a few cases, women
frequently received additional support from family in tasks such as cleaning, repairs and
grooming. They reported that they felt more comfortable doing so than asking paid support
providers to perform extra tasks. As one woman said:
My parents assist me in grocery shopping. I give them a list and they bring it
to me. My parents visit once or twice a week and do some extras in terms of
cleaning up. If I want a special meal, they’ll do that. Sometimes, it’s easier to
request my parents to wash my hands extra, or extra face wash.
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In one case, a woman reported that although she received enough paid support, she did not
have enough sources of support. She explained that although the support relationship she
had with her husband was reciprocal, they relied too heavily on each other because neither
of them had anyone else to whom they could turn. She said that although she cared deeply
for her partner, she felt trapped and suffocated by their dependence on each other. She put it
this way:
With my partner, sometimes I feel like I’m being suffocated; we need each
other too much. Sometimes, I wish he would turn to other people rather than
to me all the time. Sometimes I get so tired. He doesn’t have a whole lot of
places he can turn either. We’re on our own.
In general, women valued reciprocal support, reciprocity being the element that made a
situation clearly one of interdependence rather than dependence. In communities,
especially families, this reciprocity was sometimes indirect (i.e., a woman would be
supported by a sister and support her brother, who in turn would support her sister).
Regardless of how reciprocity was conceived, a sense of balance between what one gave
and what one received was important. One woman described the reciprocal contributions
she and her husband made.
I think what makes us so close is that we can help each other.... He helps me
physically and I help him verbally and intellectually. I read books to him,
newspapers, explain things. Anything that he needs help understanding I
explain it. He drives, helps me in the washroom. I’m very independent. I
don’t like to have people handling me, but I don’t mind it when he helps.
Another woman described the “talk” in her informal relationships of support as the means of
reciprocity.
Both of my aunts have been really supportive. I’ll have supper at their
houses. They make sure I’m eating on a regular basis.... We talk about what’s
going on, what’s my destination. The past year I did a lot of travelling. It’s
mutual, I talk and they talk. My one aunt is like a second mother.
A concern on the part of some women with disabilities was that a lack of acknowledgment of
reciprocity created barriers to respectful interdependence. They were concerned that their
contributions were not granted the merit of contributions made by others and that they were
seen as always being on the receiving end of support. As one woman stated:
There seems to be an imbalance because I do need support physically. The
kinds of support I give to everybody in the family with problems and
situations, doesn’t equal. It feels like an equality thing. They just see the
physical needs as carrying more weight.
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Another remarked:
I supported my father all through my mother’s deterioration. I’ve been the
one who’s been there to talk to him and provide support. But when it comes
right down to it, he sees me as dependent and helpless. In reality, he is reliant
on me. If you were to ask him, he’d say his wife is in a nursing home and his
daughter is quadriplegic. One of my brothers will go over and spend an hour
cleaning the eavestrough, and isn’t he wonderful? The hours of support I
provide don’t count. I used to cook for him and I can’t anymore. Certain
kinds of help are valued more.
In fact, many women with disabilities in the study reported making significant contributions
in their relationships of support and their communities. The ways in which they contributed
varied. They reported belonging to community organizations, providing emotional support
to friends and family, raising children, doing housework and cooking, fixing things, babysitting and providing support to community members who were elderly or ill. Describing the
friendship she has with a woman to whom she provides paid supports, one woman said:
She helps, she listens when I need to yell at somebody. She’s more like a
friend than an employer. She also baby-sits, at least once a week, sometimes
overnight, a lot of times two or three hours.
Access to supports and services enabled women with disabilities to make contributions within
their relationships. Generally, women who had sufficient support had the time and the means
to do things for others. Some women with disabilities do not contribute to their community
because they do not have sufficient opportunity to do so, or are regarded primarily as
recipients of support. These circumstances inhibit women with disabilities in attaining
equality because they are positioned as dependent (rather than interdependent) when they
receive informal support.
Women with disabilities who worked full time wanted to provide more support to others
than they already did. But, they felt they were prevented from doing so because of the
demands of their jobs. They reported that they were frustrated by the fact that they could not
“be there” for their friends, spouses or children to the extent they wished.
Other women with disabilities found that respectful interdependence was compromised
because others relied on them too much for support. One woman said the amount of support
her friends required left her emotionally drained. As she explained:
I’m there to provide a lot of emotional support for other friends. I often think
it would be great if I would get paid for it, because it seems I do so much of
it. A lot of my friends have disabilities, and sometimes it’s a real burden to
carry, in terms of being able to deal with it emotionally. Most of those friends
are a burden on me because I’m a good listener.
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The types of dependency and interdependency that emerge in any relationship, especially
those that involve disability, can be very complicated. It is well documented that people
(most often women) who take time out of the paid labour force to be unpaid homemakers or
parents are at a disadvantage in terms of their earning power and career opportunities. As
one couple in the case studies explained, this disadvantage is exacerbated when there is a
need for disability-related support. The couple identified their own circumstances as a case
in point. In their situation, the woman with a disability earns the income for herself and her
partner, and she relies on her partner for unpaid support. They feel trapped in these roles and
felt that a situation of co-dependency, rather than healthy interdependence resulted. As the
woman with the disability explained:
I am very concerned about the discriminatory system whereby spouses and
partners are not eligible for any recognition. That forces me…I would
sometimes like not to be the principle income earner in our relationship.
Maybe spend some more time doing some writing. That simply isn’t possible,
because my partner has not had the opportunity to establish as firm a career
position as I have. And she won’t ever have the opportunity—we’re caught in
a sense, in a certain catch-22. She’s caught supporting me so that I can
continue to support our household, and we’re never going to get the
breathing space to change that.
Support Providers
The importance of relationships that encourage respectful interdependence is also evident
with respect to support providers. In the case of those who are paid to provide supports, the
reciprocity generally comes through pay, job security and job satisfaction. That they are
provided these benefits according to the extent and nature of the support they provide is
important. However, as is seen in the section that follows on ensuring security, this is not
always the case. Many support providers reported low wages, a lack of benefits, low security
and limited opportunities, though they noted the services they provided were essential to the
consumers’ independence. Consumers of services also noted this imbalance. This emerges
as a tension in women’s relationships. Nearly all acknowledged it as a problem, but felt they
had very little control over it, if any.
This situation set up a strange set of dynamics within the relationships. Women with
disabilities felt that since they had little control over wages and benefits, they had to
cultivate personal loyalty to hold onto the services of women with whom they valued
support relationships. Some women did this by establishing friendships with their support
providers; others offered perks, such as Christmas bonuses, loans of their vehicle or other
favours. One situation was described in which a consumer retained the loyalty of her
favourite attendants by paying them more than she paid others. One attendant said she had
worked for a woman who helped another attendant achieve her immigrant status. Many
workers said that despite the low pay, they stayed in the job because they liked, and felt
needed by, the consumer of their services. Some were politically committed to their work in
supporting rights and independence; others had social or religious motivations. Some
stipulated that they saw support provision as a job, and they found situations with sufficient
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perks and benefits to make it worthwhile. Those who didn’t report these motivations (as well
as some who did) were dissatisfied with the work and felt trapped in it for various reasons.
As stated earlier, reciprocity in interdependent relationships is not always direct. That
workers “get something out of” a role is not the responsibility of the women receiving such
services. For respectful interdependence to occur within such relationships, it is important
that neither woman entirely depends on the other. As such, the availability of outside
supports to workers in the form of job support and training is important. However, most
women who participated in this study did not have formal support in their jobs. The one
exception was a woman who worked in a semi-institutionalized setting. She reported that
she received support from her co-workers, from a team of professionals (which included
social workers and therapists) who were available to give workers (and clients) advice and
support, and from her supervisors, whom she described as approachable and willing to
accept input.
We have job support; we have information. Every time I need information we
have a social worker, an occupational therapist and a home ecologist. Staff
can go to them and clients can go to them.
The women who worked in private homes (regardless of whether they did so through an
agency or under direct employment) did not have access to these forms of support. Some
described their clients as sources of support. In such situations, the women for whom they
worked usually sympathized with problems related to their jobs (such as low pay and
inadequate work hours). In some cases, the women listened to each other’s personal
problems. In one case, a woman who worked for one of her family members received jobrelated and on-the-job support from her husband and son. Others, however, felt they
needed more support, even if this were simply a place in which to vent their job
frustrations. As one worker explained:
I definitely would love to have support. People who work in projects
constantly vent and gossip in the lounge, it’s the place for that. I don’t work
in that kind of environment.
Issues also arose for these women because they often failed to receive support within their
communities. They not only provided poorly compensated paid supports in the work force, they
also seemed to carry a large burden of the support which is provided in their communities,
receiving little support in return. These women tended to be stressed and had little time for
themselves. One woman described her situation.
Well the amount of support I give is...all of myself. I don’t get anything back.
I have one client who talks to me. My other two clients: I give everything.
Because I’m never here, when I do get home I’m exhausted, and my home life
is falling apart.... My husband doesn’t come home a lot because when he
comes home, the house is empty.
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Likewise, if informal supporters are relied upon too much, there can be negative impacts
upon their economic and social security.
Most of the informal support providers in the small sample studied felt they had sufficient
informal support. (It is unclear whether or not this would be the case were a larger sample of
women to have been interviewed.) Furthermore, the relationships of support they described
seemed to be fairly equitable and reciprocal. In one situation, an informal support provider
said that more support was needed in order to support a sister who had been removed from
an institution. In this circumstance, family members did not contribute support and the
systems of organizational support that were in place when she left the institution had broken
down.
Ensures Security
Women with Disabilities
The equality of women with disabilities is supported when their security is ensured within
their relationships of support. Many of the women with disabilities who participated in the
study described being in situations at some point in their lives where they had been abused
physically or in other ways by persons providing their services. Such unacceptable
possibilities are an important reason why women with disabilities want control over who
they hire. They wanted to engage in support relationships with women they felt safe with
and trusted. The relationship between women with disabilities and paid supporters is
complicated. Women with disabilities point out that, by definition, they are in a position of
vulnerability with respect to their staff. They are often isolated in their apartments and
homes, seen naked or in a bathtub, lifted by another person. One woman said:
The attendant can drop you, drown you, scald you, walk out on you or just be
rougher than necessary. Every day, I am rolled over in a position where I can
barely breath and if an attendant for whatever reason chose to ignore my
hand signal indicating that I had to be turned back I would be a goner. Dead.
No evidence of rough stuff or anything.
In addition, women with disabilities may be vulnerable to financial abuse. This is especially
the case when they have little control over who is providing support to them and when many
different people come into their homes. Not only do attendants and home-care workers have
access to women’s belongings in their homes, consumers often must rely on assistance in
handling money, credit cards and bank cards. A number of women with disabilities in this
study reported that attendants had stolen money from them. One of these women did not
know which of her attendants was the thief; thus, she was uncertain which of them she could
trust. As she explained it:
I just had a situation where an attendant stole a large sum of money from me.
The money was one thing. But now I’m thinking of everyone that comes in the
door and bathes me and wipes me. I wonder which of these people has so
little respect for me they would do that and think: “Ha I’ve duped you!”
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They’re not bondable because the supervisor says it’s too expensive. It could
be any one of six people.
Some women indicated that workers must be screened and that a system by which workers
are accountable for job performance and inappropriate or abusive behaviour must be put into
place. Users of various service arrangements raised this as an issue. Most support providers
indicated that they were required to be bonded in order to be hired; however, this seems as if
it would be an insufficient protection against abusive workers. Some service users were
concerned that abusers would not be held accountable legally even if they were charged with
a crime. One woman describes her failed attempt to prosecute a staff member who had
robbed her, and expressed concern that the woman continued to work elsewhere as a support
provider. She said:
I had a woman who worked for me who would put me in the tub and go
searching through my apartment for money and stuff. It happened to others
too at the building. I ended up taking her to court. I set her up. Put money in
my wallet and put it in the drawer. She took the bait; I took her to court. In
court the lawyer pulled money out of his wallet and paid restitution, so it got
thrown out of court. The agency let her go, but they hadn’t done their job in
the first place and checked her references. She’s probably working
somewhere else; she may still be doing it.
In another situation, a family member of one woman with a disability in the study explained
that a government ministry recommended a worker for her who was negligent and abusive
despite the fact that some people in the ministry office were aware that she had done wrong
in the past. Furthermore, despite the fact that some people in the ministry had informal
knowledge of her wrongdoing, she continued to work because no structured system was in
place to keep track of workers who have caused harm, or who are suspected to have caused
harm. The lack of mechanisms to track undesirable workers is endemic. As one woman
remarked:
There’s some people...that did something wrong, gave the wrong medication,
were shoving clients around. The Department of Health had given the best
recommendation. They don’t know what they’ve done with another patient.
And when I tell them about it, they say: “Oh my God. I didn’t know she was
in your house too.” Another worker told me. It was too late then. I don’t want
them in this apartment. I don’t want them here.
The security of women with disabilities also depended, in some instances, on the presence
of support providers at particular times. In this way, access to personal and home supports
also contributes to safety and security. Women feared harm to themselves from falling, for
example, if no one was nearby to help them get up. One woman described lying on her
lawn for hours before her mother arrived and helped her. Women were also concerned that
if they had to wait for services such as bathroom assists, health problems could result over
the long term.
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The security of women with disabilities is also affected by the conditions under which
support providers work. It is specifically this type of interaction that makes the issue of
equality within relationships so vital. To be secure, women with disabilities need
consistent workers who do a good job, have a strong work ethic and like the work they do.
They do not want to deal with staff who are sloppy, rush through their tasks, or resent the
job they do, since these factors affect not only how they are treated, but also the quality of
services they receive.
These factors hinge, in part, on the working conditions of staff. If workers are tired and
unhappy due to poor working conditions, the quality of the services they provide is reduced.
One attendant worried that she was no longer a good attendant because she was burnt out. The
burnout of staff could cause safety risks for them and the women for whom they work, for
they could become careless and make mistakes, which could result in serious harm in intimate
care and medical care situations. In addition, burnt out workers could be more irritable, and
the risk of abuse for women with disabilities could rise.21
The difficult conditions under which support providers often work, the low pay they receive,
and lack of benefits attached to the job result in high staff turnovers, which, in turn, can be
distressing for consumers. It increases the number of persons they deal with for their
personal and home care, increasing the time they spend training people, escalating the risk
of abuse and, generally, disrupting their lives. Nearly all the women with disabilities who
participated in this study reported that they like to employ the same worker(s) regularly, for
a long period. As one remarked:
I’d like to see more consistency and flexibility. One of my biggest pet peeves
is continuity of care.
Women with disabilities find it less disruptive when women they know well come into the
home to assist them in intimate ways, for this continuity reduces the need for ongoing
training. One woman described her own situation.
They hire girls and float them all around. A lot of different people used to
come. You never knew who was knocking at your door. Now I know who is
walking in my door, and if there’s a conflict, then it’s up to me or them, as
opposed to someone else deciding whether they fit the job.
While quite a few women had established relatively long-term working relationships,
women with disabilities repeatedly stressed how difficult it is for them to retain workers
over the long term with the low pay and inadequate benefits offered, or lack of benefits
altogether. As one woman with disabilities described it:
Long-term workers are hard to get.... The home-care profession is poorly
paid, just over minimum wage, so I don’t expect to keep them. There’s no way
you can live on the wages of home care. Home workers are poorly paid. I
heard other friends say the same thing, too. When you end up leaving
because the wages are so poor.
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The odd hours which attendants work pose problems for women with disabilities who need
services for short periods of time. A number of women in this sample had one- or two-hour
shifts they needed to fill. Some were regularly left without the services they needed for that
hour. For these women, no support for an hour means, perhaps, no help to get out of bed or
go to the washroom. Either situation could be seriously inconvenient, uncomfortable and
dangerous. Nevertheless, some women believed it was unfair to ask workers to come in for
an hour or so, especially in the early morning, for only $8 or $10 or $12. One woman said:
I have one woman who has been working for me for a few years now and she
works one hour a day, Monday to Friday in the middle of the afternoon for
$12.50 an hour, and that’s all she gets. She comes here; she’s here for an
hour. She comes on time, she knows she can’t just take a day off. And she only
gets paid $12.50 for that. It is hard to get high quality people at that rate of
pay. You can cultivate a certain amount of loyalty, but you are not necessarily
going to be able to attract and retain people.
Not being able to access support at a crucial hour (i.e., early morning to prepare for work) or
need (daily shower) may inhibit the security of a woman with a disability in society at large
by restricting the opportunity to gain or advance in paid employment, for example.
Women with disabilities reported they had a difficult time finding qualified people to work
for such low rates of pay. One attendant (herself qualified as a dental assistant, not a
caregiver) reported:
I have a friend who has a diploma in this, but she doesn’t work in it. She
makes more working at a grocery store.... My friend figures what’s the
point—she has extensive training, Braille, sign language, interpreting—and
she’s working at the corner store.
Support providers too were worried that their own burnout, low qualifications or lack of
training may result in harm to consumers. One support provider worried that because she
lacked relevant information, she might cause harm to her client. As she explained:
Sometimes, because I don’t feel like I know everything about her machines—
when she gets sick maybe it’s not me cleaning the machines right.
Another worried that she might make a harmful mistake due to fatigue, while still another
described being uncomfortable with her own irritability and lack of sensitivity on days when
she was tired.
Support Providers
The security of support workers, not surprisingly, is affected by the working conditions
established in their relationship with consumers. The difficulty of the work they do, long
hours, low wages, limited benefits and limited access to safety training (when true) impacts
their physical, financial and social security, and thus their equality of well-being.
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Some attendants complained of burnout. They described their jobs as hard work, which is
physically and psychologically exhausting. Some worried about the impact their job would
have on their own health. Many felt they could not continue to do attendant work due to
their own physical decline. A number of women reported that they had developed health
problems, such as back injuries, as a result of their jobs. This was especially a concern for
one support worker who had a disability herself.
It’s a job. It’s very gruelling. I can’t say I like it. I have a branch of muscular
dystrophy. So, I find it very exhausting work, but I’m not qualified to do
anything else. I find it very tiring.… But I’ll do this until I can’t do it
anymore.
Similarly, the security of unpaid support providers may be compromised by health risks. In
one of the case studies, family members of a woman with disabilities felt their physical
health was compromised by the stress involved in their support situation.
It’s unbelievable, the hurt and the heartaches and everything like that family
members are going through.... Look at my wife; she’s going to find herself in
the hospital. And myself. Both of us are putting up with this every day; this
screaming and the beating, kicking and punching throwing the furniture
around.
The job of a support worker often involves inconsistent hours that are sometimes split up or
extend overnight. Some workers were content with these arrangements because they fit with
their respective lifestyles. Others felt these factors affect the kind of rest attendants can get
when they are “off-duty.” They complain that they are often grumpy and tired. Sometimes,
they must get up very early in the morning, or stay up very late. Furthermore, they do not
feel they always have much control or choice. In some cases, this was also stressful and
disruptive to the families and social lives of support workers. As one worker remarked:
It’s all work. Working straight hours. Work and shopping, and that’s it.
Between shopping for them, shopping for me. It doesn’t sound too good, does
it? It’s not that great. Constantly. Right from six o’clock in the morning. I
have two or three splits a day. I come home between and do laundry or
housecleaning, whatever.... By the time I finish with my last client, and then I
have to go clean a bank, I come home and make dinner and I’m not joking,
it’s about 9 o’clock. I lead a very uneventful life. I don’t associate with other
people. I don’t have time.
Another woman described her situation in this way.
I’m burnt out. I’m tired of figuring out the relationship lines. It’s a very
intimate job, but I’m supposed to be professional. There’s no guidelines, no
discussion. It’s all private.... You get close to people you’re working with and
that’s hard to figure out. It’s not like you’re at an office; your workplace is a
home.
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Some support workers felt isolated as staff in people’s homes, where they are without coworkers and other people around them. One said:
I would like to get a job at the hospital because that would give me some
interaction with other people. It’s very insular, that’s one thing I do miss I’m
basically on my own.
Not all workers felt this way, however. Some valued the insularity of the support situation,
for it enabled them to develop close one-on-one relationships with their clients.
Just as women with disabilities need access to support services, women who work as service
providers need good working conditions so they are not disadvantaged within the terms of the
relationship. Workers tended to be satisfied with their job if it paid appropriately. Adequate
pay increases women’s security, status and choices in their lives. This was the case with
physiotherapists and other professional service providers, who were paid as much as $50,000
per annum. The rates of pay for home-care workers were, in general, low, although these
varied from province to province. Workers in St. John’s, for instance, were paid as little as
$5.60 an hour; those in Winnipeg averaged about $9 an hour, and those in Toronto averaged
about $12.50 an hour. Some women who are disabled recognized that low pay and lack of
benefits marginalized their staff. Many were concerned for their staff; they expressed the
desire to provide better employment for them.
The security of support providers is also affected by their access to employment benefits
and workers’ compensation coverage. These benefits variously protect workers if they
become injured or ill. However, the majority of paid support providers in this study were
not protected in this way. Women who provide supports and those who receive them
regard both the lack of benefits and the lack of workers’ compensation coverage as
significant flaws in the way that support services are currently delivered. One respondent
remarked:
I think you should get benefits.... I think you should have medical and dental
plans. It’s something you’re going to need.
Women expressed concern that those who may become ill or injured have no protection
other than the social assistance system, a system that was perceived as inadequate. Some
worried that injury could lead workers to take even more marginalized employment. They
were concerned that this may become a reality for many women who work in this field,
since some types of support work involve physical tasks (such as lifting) which make one
vulnerable to injury.
Women with disabilities receiving individualized funding and employing their own staff
were concerned with the impact the lack of benefits and workers’ compensation coverage
had on their workers’ security and well-being. They worried about what would happen to
them if workers were to hurt themselves on, or off the job. Some felt guilty that they were
not able to provide better employment conditions; they emphasized that they simply were
not given the necessary funding. In addition, they described the complications that ensue
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because they do not have a large enough staff to purchase benefits packages, and are not
able to offer their staff full-time hours which would render them eligible for such packages.
As was outlined earlier, the labour issues of workers not only have an impact on their
security and well-being, they also affect the well-being of consumers they support.
Likewise, the service issues facing consumers affect the security of workers. When a paid
support worker’s client receives the other services and aides she needs, the worker is less
likely to carry out tasks that could cause her harm. If, for instance, a woman with disabilities
has access to a mechanical lift in order to get in and out of bed and the bath, the amount of
lifting her attendants must do is reduced, decreasing the physical stresses of the job and the
likelihood of injury. Similarly, if a woman has access to physiotherapy or exercise, such as
swimming, her physical comfort and capacities may be increased, and the amount of
physical work her workers must do may be reduced.
What benefits the well-being of one group does not always work in the other’s favour
however. Some aspects of service provision that women with disabilities outline as essential
to their equality of well-being come with notes of caution on the part of support providers.
For example, workers caution about the notion of “absolute choice over workers.” As
employers, labour codes and human rights laws bind service recipients. Their right to selfdetermination in whom they hire is qualified by the rights of workers not to be dismissed
unfairly or discriminated against. The control an employer/client has in relation to the
women she hires, retains or fires can increase the vulnerability of a worker. Respondents
described incidents in which they experienced conflict, where the systems in place,
supposedly, to protect them were invariably inadequate.
I have experienced conflicts. It’s been hard.... It’s like fighting with a friend,
and they have power over me. They can fire me, and I have a reputation to
keep up. I depend on my reputation to get other work. I know who’s a good
attendant. It wouldn’t scare me so much if my job didn’t depend on it.
Especially since the people are under individualized funding, there’s no other
party to help work it out.
Like other members of the broader society, women with disabilities may have prejudices
and may make unreasonable decisions. A worker’s security may be compromised if she is
fired or let go in unreasonable circumstances, such as a client’s bad mood, a disagreement or
racism. As one White attendant remarked:
When I work in places where a lot of the employees are Black, people will
confide they don’t want them in their apartment and they start stigmatizing.
In fact, one focus group participant described repeated incidents in which clients did not
want her to work for them because she is Black. She explained that although these clients
did not have the power within the service agency to refuse her services based on race, they
made repeated complaints about her, which caused her to lose shifts. She strongly believed,
furthermore, that they fabricated these complaints so they would receive their services only
from White women. As she stated it:
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The White people, they can say anything they want. Clients never say
anything. We [Black workers] say one thing wrong, they make a complaint.
Even just saying “hey what’s up?” I can’t say that. You have to watch what
you say at all times with certain people. They’re never satisfied. They always
complain.
Neither did attendants think that flexible service provision worked in their favour in every
respect. They felt that the flexibility of service provision to women with disabilities
compromised their own physical and psychological security at times. Attendants were not
sure how to resolve this dilemma, or if it could be resolved. Some felt that it may be a
necessary downside to their job. Nevertheless, many felt they could not continue to do the
job because it took a great toll on them.
I feel like my week is wacky.... You organize your life from pay cheque to pay
cheque. I organize my life around my work. When I work night shift, the
whole day I’m thinking about the fact I have to work. And you don’t know
when a person’s going to bed. You just have to stay up, no matter how late or
how tired you are.
In addition, those who work under self-management felt as if their financial security was
sometimes at risk as a result of their employer’s flexibility. For example, while they felt
their employers had a right to go on holiday, this had a financial impact on workers. Staff
tried to organize their own holidays around their employer’s holidays, but they were
concerned about how to get through even brief periods without pay. They complained that
their employers sometimes did not notify them in advance in order that they could arrange
alternative employment. One attendant remarked:
I take time off whenever anyone is away. When I’d be losing money anyway.
But often they don’t tell you in advance because they know you’ll need to find
other work and they might lose you.
Democratizes the Decision-Making Process
Women with Disabilities
Having agency in decision making within support relationships is an important equality
criterion for women with disabilities. As was discussed earlier, first and foremost, it is
essential that consumers of services determine for themselves important aspects of service
provision. However, because they are acting in the contexts of systems and relationships,
this happens, at times, as part of a process of negotiation.
The agency of consumers in such negotiation may be restricted for a number of reasons and at
a number of levels. In some instances, women with disabilities felt they were not sufficiently
included in the decision-making processes regarding their assessment of need for support and
determinations of eligibility. They insisted that to ensure their needs are determined
holistically, they should have a say in their own assessment. As one woman put it:
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I would like to see, in terms of policy, in terms of people who require more
care, I’d like to see policies more inclusive. They should have a say in
assessments done on them and access to those assessments.
The availability of supports also may contribute to the agency of a woman with a disability
in her dialogue with those who provide support to her. The more dependent a woman is on
another person, the less power she has within that relationship. When a woman continually
needs to request extra assistance from her paid and unpaid support providers, it reduces her
bargaining power in these relationships.
Agency in decision making is also affected by the structures of the support provided. In
some types of support arrangements, the control women with disabilities have in setting the
standards of care, and requirements that attendants and home care workers comply with
these preferences, is integral to the service. Women in individualized funding arrangements
were generally satisfied with this style of service provision in this respect. They hired people
they felt respected this condition, trained them in how to carry out their tasks and had the
power to let a worker go who did not follow directions. While some agencies also supported
decisions of women with disabilities in such matters, others had rules that seemed to
override the decisions of the consumer of services. This occurred sometimes even when
workers acknowledged their clients’ right to decide such matters.
Effective communication between women with disabilities and their support staff promotes
equality for the respective parties in these relationships, and improves the quality of the
relationship itself. The majority of women who participated in this study reported that
communication in their support relationships was good. Many of the women with disabilities
were able to articulate their needs to their staff, as well as instruct them, with regard to the
way they wanted tasks performed. In turn, their staff appeared to listen to these instructions
and respond appropriately. One woman put it this way:
My attendant is careful with the way she uses her words. I can talk to her,
and she really listens. She’s said a couple of things, and I’ve corrected her
and they stop.
Many paid support workers indicated that they too felt satisfied with the communication in
these relationships.
Communication between women with disabilities and their supporters became especially
problematic when there were conflicts. The way in which these conflicts were resolved to
some degree depended on the service arrangements governing the relationship, as well as on
the policies of particular agencies.
Paid Support Providers
Most support providers interviewed felt their participation in democratized decision making
was not compromised if the women with disabilities for whom they worked had control over
the tasks they performed. Nevertheless, workers felt that, at times, boundaries in their jobs
were blurry, which was confusing, and uncomfortable for them. Workers emphasized that
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they did not want rights taken away from their client/employers; however, they wished that
consumers would consider the ways in which blurred boundaries affect workers. This
blurring of boundaries between women with disabilities and their attendants occurs for
various reasons, one of which is the complexity of the relationship that oftentimes develops
between them. Indeed, both attendants and women with disabilities described the intimacy
of the situation, and the friendships that develop. Attendants reported that, because of the
ambiguous character of the relationship, their employers would sometimes ask them to
perform tasks which they considered to be outside of their job description. They reported,
furthermore, that although they often performed such tasks, they wanted their employers to
recognize that, in doing so, they had done favours for them.
In addition, attendants said that situations arose in which boundaries between them and their
employers seemed not to exist at all, nor was it clear whether they were expected to act as an
employee or as a friend. Attendants reported that this ambiguity often arises when they travel
with employers; they regarded the role of travel attendant as confusing and demanding. In
travel situations, attendants are usually paid for some of their hours, but not all of them. The
trip itself is often regarded as a “perk.” One attendant remarked:
Travelling is always complicated around having time off. Especially when you
don’t know if you’re a friend or a worker. When you’re out for dinner; when
you’re looking at the Eiffel Tower. With the guy who wanted to go to Italy, he
was not seeing me as an attendant. He just acted as though we were going to
hang out, have a good time. But I am working 24 hours a day.
Support workers also felt there needed to be a more collaborative decision-making process,
particularly when tasks come up which are not clearly a part of the job. In these cases, they
wanted consumers and staff alike to have some form of communication guidelines to clarify
the situation. As one attendant stated:
There is a distinction between a job-oriented task and a favour.... Sometimes,
you do things for your employer that they could do for themselves and you
think, hey you can do that yourself. They might have their reason, but you
need that communication. You want there to be logic. I had a huge issue with
one woman because I had to rinse her hair for a long time. She kept telling
me I wasn’t getting her hair clean enough, and I resented it. I knew it was
rinsed. One day she tells me she liked the feeling of hot water. I loved that.
That was a good reason for long rinses. I just hated her saying: “No, there’s
still soap.”
Questions of identity and boundaries also arise when attendants work as nurturing assistants
(i.e., assist a parent with a disability to care for her or his child). One worker participating
in the study explained that the boundaries involved in that triangular relationship are
complicated. She explained that workers could find it difficult to be responsible for a child’s
care, yet not respond to the child’s needs. As she put it:
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It’s difficult if you have physical contact with this baby that needs to be
bonding with the mother. The child might be crying and the mother doesn’t
want you to comfort the child. It’s hard if the child is reaching out. The
mother might be uncomfortable bonding with her infant with an attendant
present. It can be stressful for the attendant. When is it ok for the attendant to
pick up the child? If the mother says feed the child more and I’m not
comfortable with it, can I refuse? If it’s getting close to lines that are abusive,
where do you draw the line?
Some attendants felt that some consumers lacked judgment regarding attendants’ own
physical limits. While they recognized that the reasons may be real and concrete (for
instance, some people with disabilities have never experienced full use of their own bodies),
they felt service recipients should trust the judgments of their staff about their own physical
capacity. One attendant, for example, described an incident in which a client wanted her to
carry the refrigerator out to the garbage. Another woman noted that some employers are, in
fact, conscious of these issues, though others were not:
One woman I work for will never want me to do anything that might hurt me.
She’s a good employer. Another will push me, and will whine later and make
me feel weird.
Because issues such as these arise, effective mechanisms for communication, in which
workers as well as consumers have agency are essential. As paid support providers explained,
they want to work for women who are conscientious employers; in addition, they want
effective and clear communication with the women for whom they work in regard to that
which is expected of them, and they want agency within the terms of this dialogue.
Again, this is particularly essential when conflict arises. Most agencies have systems of
incident reporting that both clients and service providers could access. Some agencies have
well-developed mechanisms for conflict resolution. Some encouraged service recipients to
confront attendants directly when they have problems with the ways services are provided to
them. Attendants who worked under individualized funding were most apt to feel they had
little or no recourse should communication break down.
The various women studied have divergent ways of dealing with the conflicts that sometimes
arise within these relationships. Some may want to address their concerns to a worker or
employer/client directly. Others may prefer some from of mediation. Regardless of whether a
given relationship is direct, or managed through an agency, a woman with disabilities and her
staff need access to a range of communication supports and choices about how to proceed in
times of conflict. This range could include (for example) guidelines that advise how to
proceed through a time of conflict, mediation services, communication workshops, and
conflict resolution strategies and services.
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Promotes Citizenship
Women with Disabilities
Citizenship includes the right to participate in communities. For women with disabilities,
support relationships may be a part of their means to do so. Paid or unpaid support providers
may assist women with disabilities to participate in communities by accompanying them to
community spaces, assisting them with transportation, providing personal care in
community spaces and in other ways.
Women with physical disabilities reported that they find it difficult to access support for
community activities since they are considered leisure or recreational.
There’s no community-based company out there to help my age group.
There’s no group out there for anyone who is [physically] disabled.… They
say there’s no funding for it.
Nor was a woman with an intellectual disability able to access funds to assist her to
participate in social and community events. Such services fall under the auspices of respite
care, and she did not have caregivers who required respite. To be sure, children and some
people with intellectual disabilities are able to access respite supports to participate in the
community. The aim is to give their informal caregivers a break from their responsibilities,
not to enable community participation. To compensate for this gap, some women with
physical disabilities transfer (and get by without) some of their essential daily living
services. For example, women who have paid support reported they use home-care hours to
get assistance to go to community events. Those without the flexibility to make this choice
either had to rely on informal support for assistance in the community or do without.
Citizenship also involves the right to liberty. The liberty of persons with disabilities is
infringed upon if they are trapped in institutions, or in their homes, because they do not have
the support they need to get out. Most women in the study had sufficient support to ensure
their liberty to live in, and participate in the community. However, the liberty of at least one
woman was at risk because she did not get enough support. The woman’s brother feared that
his sister would be institutionalized as he and the rest of the family “burned out” in their
capacity to provide unpaid support.
I have to be there all the time.... I may give it up, and if I do give it up, where
are they going to put my sister?
In other situations, the equality of women with disabilities may be overtly compromised by
persons with whom they have support relationships, as those people intentionally restrict
their liberty. In cases where people are isolated and dependent, they may be trapped in their
homes as an act of overt abuse, or because a support provider feels it is in their “best
interest.” This is clearly not appropriate.
Ironically, for people with disabilities advocating for oneself or others, usually considered a
mark of citizenship, can put citizenship at risk. A number of respondents feared there would
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be repercussions if they struggled for their right to services. That is, they were perceived as
troublemakers. In some cases, informal support providers worried that their family member
might be punished if they spoke out and advocated for that person. One mother felt her
daughter might be at risk of abuse by her attendants if she complained about the quality of
service.
Things are not always done the right way. Some attendants don’t take enough
time. Some attendants need more training, under better supervision. It makes
more work for me, but I don’t say anything because [my daughter] says it
will be taken out on her. They might scare her or something, like move her
roughly.
Members of another family feared that if they were to advocate for more support, social
services would punish them by taking away their supports. Connected to other families in
similar situations, they described this fear of reprisal as a trend that silenced families.
Families are being cut if they speak out, they’re going to lose the very little
they have left...that’s why family members are afraid to speak up and say this
stuff is happening to them.
Withdrawing support from people who depend on it for their health, safety and well-being
could seriously compromise their well-being. Mechanisms to ensure that people are not
punished in this way must be built into service systems. These could include education for
those who work in the system in order that they respond respectfully to advocacy.
Protections could be built into the system which make it difficult for service providers to
disqualify a person arbitrarily. In addition, conflict resolution and appeal procedures could
be put in place.
Societal attitudes toward disability have an impact on the extent to which women with
disabilities participate in communities. These attitudes may be reproduced or reconstructed
within the context of relationships. Respondents in this study described different community
attitudes toward people with disabilities. Both women who were and were not disabled felt
that although disabilism is not as pronounced as it was at one time, there is still a considerable
amount of it. They described occasions on which people treated women with disabilities in
patronizing ways, stared at them, made rude comments to them, asked them inappropriate
questions, and did not allow their children to talk to them. One non-disabled woman
articulated her experience of disability discrimination.
People’s attitudes are incredible. Some people are so ignorant. There are
many well-meaning people who are often overly solicitous. There are many
kind people who are ignorant and don’t know the correct language to use
and so on. There are also people who are so dense that they don’t get it at
all. They don’t understand that she’s an adult; they pat her on the head like a
dog. They’ll come up to her, total strangers and say: “What happened to
you?” They have no manners. It’s shocking and it’s always upsetting every
time it happens, but it happens.
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In some cases, women with disabilities are not welcomed in the community. As the mother
of a young woman with a physical disability remarked:
I think things have changed.... They’re more in the open, but they’re still not
accepted; not even in church.... People have asked questions like why do I
keep her? Why don’t I put her in an institution?
Although in both of these situations the non-disabled woman was in clear support of the
citizenship rights of the woman with a disability, we can surmise how easily a different
attitude could compromise citizenship. Suppose either woman agreed with the community
members. Not only would they further perpetuate negative stereotypes about disability and
encourage further hurtful behaviour, but they may also have used their own power to remove
rights, liberty and opportunities from the woman with the disability and restrict her
participation in the community.
Women described how they encountered physical barriers, such as inaccessible workplaces,
restaurants, bank machines and other community spaces. One woman commented:
Not that we’re bar flies, not that we would go out drinking and dancing very
much, but the gay part of Toronto is not accessible. Period. There is no place
to go and dance and party and play with other lesbians. So there’s that.
Physical barriers; where we can and can’t go in terms of restaurants.
In addition, women felt that systemic discrimination in the form of, for example, barriers to
economic security continues to pose problems for women with disabilities. One said:
I think there is a lot of financial discrimination that makes it difficult for
people with disabilities to be included in the workplace so they can have a
combination of disability insurance plus productive work income. People
with disabilities are discriminated against trying to work by having their
disability pension decreased.
They also spoke of the sexual discrimination faced by women with disabilities. This
discrimination takes a number of forms. Two of the women with disabilities referred to the
discriminatory belief that women with disabilities are asexual. They said that insofar as they
were not seen as sexual, they found it difficult to date. One felt as if some of the people in
her life were very uncomfortable when she did go out with men. Others pointed to the risks
of sexual abuse faced by some women with disabilities.
While these describe attitudes of community members outside of relationships of support,
such attitudes may affect the equality of both women, and their relationship. Barriers to
employment may lead to dependency not only on the income support system, but on family
and friends, reducing one’s agency in those relationships. Exclusion from one’s community
could isolate a woman with a disability from sources of support outside of her partner,
increasing her vulnerability within that relationship. In these ways, issues of citizenship may
affect very intimate parts of women’s lives.
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Some respondents also felt that members of racial and ethnic minorities who were disabled
faced dual discrimination, and this may be played out in relationships of support. As one
respondent said:
If you are Aboriginal and disabled you are probably more discriminated
against than if you are White and disabled. There’s probably an ethnic
prejudice against Aboriginal people; there’s probably beliefs that they did it
to themselves, through their own actions or negligence. They think they
aren’t as deserving of services or services would be wasted on them. I think
some service providers feel this way.
In contrast, some respondents described the people with whom they engaged in relationships
of support who promoted their citizenship by addressing barriers to community inclusion
and instances of discrimination. Paid and unpaid support providers alike played this role.
Sometimes, they addressed discrimination overtly, by challenging discriminatory actions or
behaviour in others. They also addressed barriers to inclusion in more subtle ways.
Describing the intimate relationships in her life, one woman commented:
At Wal-Mart, some other little girl is asking my four-year-old niece: “What
happened to her?” My niece said: “What are you talking about? This is my
auntie.” She said: “My auntie came out of her mother’s tummy like that.”
And looked at her, like what’s the matter with you?
One woman described her efforts to promote the inclusion of her sister-in-law with an
intellectual impairment in her community.
I have introduced her to family and friends, people who have never had
contact with anyone like [her] before. I try to get her in the public and I try to
get people aware, get her back into the same stores and malls so they can get
used to her and now they are starting to speak to her.
The situation of this woman with an intellectual disability illustrates that not all families
accept their disabled members. While part of her family is extremely supportive, others are
not. Her sister-in-law goes on to say:
I would just like some of her relatives to recognize her. They don’t recognize
her as a human being. We have asked them for pictures so we can show her
who they are; only three sent them. We’re trying to make family and relatives
aware of how good she can be, that she’s a human being.
Support Providers
Women who are support providers also have the right to enjoy their rights as citizens. Like
women with disabilities, this involves their right to participate in communities. Women who
are not disabled do not face as many obstacles as women who are disabled. Some issues,
however, do arise. For paid and unpaid support providers alike, their access to the community
may be restricted if their role as a support worker leaves them with little time or resources to
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participate in communities themselves. A number of women reported that this was the case.
(This was also the case of some women with disabilities. That is not to say the woman with a
disability in the relationship is herself to blame for any restricted participation of support
providers in communities.)
Some paid support providers were balancing support work with other work and family
responsibilities, with little support in return. Reasons were not forthcoming as to their choice
to work more than one job. Presumably, well-paid, full-time work was not available to them
and they needed income to supplement the money they were paid for their support services.
Others found balancing one job and domestic responsibilities to be taxing. Insofar as they
worked too much, this caused them stress and created situations in which they were socially
isolated and did not have time to rest, enjoy leisure activities, or fulfil community and family
responsibilities. In short, their equality was compromised.
As mentioned above, the right to freedom of speech without repercussion such as
withdrawal of support, or harm to oneself or a loved one is an issue when support
providers advocate for services on behalf of consumers. It also may be an issue for workers
who organize for workers’ rights. One respondent described a situation in which a worker,
interested in unionization, was let go. While management cannot legally fire someone on
this basis, service recipients had filed a barrage of incident reports, which largely referred
to his “attitude.” Consequently, he was suspended. Over time, worker, management and
client relations became so adversarial that the staff member left the job permanently.
In summary, equalities and inequalities in relationships between women are clearly affected
by the extent to which the six criteria for equality are met. Overall, the equality of both
groups of women is ensured when relationships promote their self-determination, foster
mutual recognition, encourage respectful interdependence, ensure security, democratize
decision-making processes and ensure citizenship. The equality of consumers and providers
of support is tightly linked. Certain conditions foster equality for both, and others foster
equality for one at the expense of the other. Since the same conditions may or may not
ensure equality for all parties in a relationship, it is important that as we address these
conditions at the policy level, the impact of solutions within the relationship context be
considered.
While relationships may be a site where equalities and inequalities are reproduced and
reconstructed, structural factors outside the relationships set the conditions for equality.
These are determined at the policy and program levels. The following chapter explores the
factors outside relationships of support which have an impact on securing equality within the
relationship.
8. FACTORS THAT ACCOUNT FOR EQUALITY
In examining equalities and inequalities in the well-being of women in relationships of
support, consistent themes emerge about the broader factors shaping these relationships,
and their capacity to secure greater equality for women. These themes can be organized
into three main areas related to provision and delivery of supports and services:
•
access to disability-related supports and services;
•
types of service/support arrangements; and
•
organization of labour.
Access to Disability-Related Supports and Services
Women may require disability-related supports, such as attendant care, home care,
physiotherapy and other professional supports, and aids and devices. Access to these
supports and services helps to foster the conditions for equality of well-being.
When women with disabilities have the range and level of services they need, their selfdetermination is promoted. When women receive sufficient supports, they are able to enjoy
most of the same choices and control in their lives that others do, such as how they like to
keep their home, what and when they eat, where they go and when. One woman described
the control she gained when she got her first wheelchair.
I was living on the farm, about 10 or 11, I didn’t have a wheelchair.... When I
finally got a wheelchair I could run away from [my mother]. When I was in
the stroller, I couldn’t.
Access to services promoted support relationships that enabled women to live where and
how they wanted, do things they liked to do, as well as have choices and opportunities with
support to achieve them. Such access also promoted respectful interdependence in their
relationships with support providers. With adequate services, they are less likely to depend
on others in ways they were not comfortable with, and more likely to be able to contribute
meaningfully. Their security is also increased, as their vulnerability to abuse, neglect,
isolation and safety risks are reduced when they have the supports and services they need.
Supports and services also facilitate the participation of women with disabilities in their
communities.
The access of women with disabilities to supports and services also has an impact on the
women who support them, on a paid and unpaid basis. It promotes their self-determination and
a respectful interdependence by removing pressures to engage in forms and degrees of support
they are not comfortable with. It fosters their recognition of the capacities and contributions of
the women with disabilities. It also protects their own security, as they are less likely to engage
in tasks that could compromise their safety and physical health. However, many of the women
with disabilities in this study indicated a need to have more hours of supports.
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I would like to have the opportunity to use more attendant hours. I tend to be
hovering at the upper limit of my entitlement for service hours and always
trying to see the balance and juggle.
Or, to have types of support for which they had been deemed ineligible.
I’d like my pool sessions covered.... I don’t go to the pool because it’s neat. I
go because I want to retain what mobility I’ve got.
More specifically, a number of women wanted access to publicly financed physiotherapy,
for which eligibility criteria for adults appears stringent. Most of the women claimed to be
coping with the level of supports they had, but felt they did not have sufficient supports to
ensure their equality. In at least one case, the woman and her family were in a crisis
situation, in part because she did not receive all the types of support she needed.
Factors Affecting the Capacity of Support Relationships to Promote Equality
There are a number of factors which restrict access to needed supports and services and,
thus, undermine the capacity of support relationships to promote equality of well-being.
These include entitlement, assessment procedures, eligibility criteria, the extent of coordinated access to funding and supports, and the framework for benefits.
Entitlement
Social policy and programs set guidelines for the levels of services to which women with
disabilities are entitled. Government programs set caps on the amount of services
consumers in general are entitled to receive. Individualized funding in Ontario, for
example, sets a cap at the equivalent of 180 hours per month (roughly six hours of service
per day); while managed care agency services in Newfoundland sets a cap at $3,200 per
month for persons with disabilities. Regardless of assessment of need or eligibility criteria,
consumers’ entitlement is limited to this amount. Consumers of services may opt to receive
higher levels of services under different arrangements, but they may be required to live in a
particular setting, or accept styles of service arrangements that restrict their life choices and
even compromise their security.
Other types of support that women may need entitlement for simply do not exist. For
example, a First Nations woman with a disability explained she needed travel funding to
access support from her family and community on a reserve located approximately 100 km
from the city in which she lived. Since no government program entitled support recipients to
such funding, she was unable to access what she described as a potentially rich source of
support for herself.
Assessment procedures
One determinant of access to supports and services is the procedure for assessing or
determining the need. A person, a team of people in a social services program or an agency
may conduct the assessment. Furthermore, the assessment could take into account a number
of different factors, such as medical diagnoses of disability or illness, determinants of physical
and cognitive capacity, lifestyle and living situation. Women with disabilities felt they were
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most likely to access the support they required when their needs were determined holistically,
with attention beyond the medical aspect of impairment and including women’s personal
situation.
Have the system on a personal level. On a system level—they look at me and
say no you don’t need help—but if they looked at me on a personal level, they
would say she does need that help. If they look at me as a person, that would
be great.
In addition, a number of women remarked that staffing concerns should be considered in
assessments if women are responsible for hiring their own staff. Some women require only a
few hours of assistance for particular needs; these women find it difficult to get services
because workers are understandably reluctant to go to a job for such a short length of time.
One woman, in particular, had a difficult time finding someone who was willing to work for
only an hour each day, in the early morning. Consequently, she was often without services
and was forced to rely on family and friends. As she explained:
It’s hard finding someone for an hour a day.… In many service agencies,
there’s a three-hour minimum, but in private we can’t do it. The funding
source does not consider that. It would be great if I could get a three-hour
block, but that’s not what I’m assessed for.
Assessment procedures for the various programs and services which are currently available
need to be reviewed and, where necessary, redesigned to account for the personal situations
of recipients. Under a coherent policy framework based on principles of independent and
community living, such procedures would enable a person’s participation and input in the
determination of her or his needs. Mechanisms are needed which ensure that concerns such
as “difficult-to-fill” attendant hours will be taken into consideration.
Eligibility criteria
In addition to undergoing a formal assessment procedure, types and amounts of support are
determined by certain eligibility criteria, which are built into various policies and programs.
Eligibility for degrees of support may be determined, in part, by the diagnosis of impairment
type. For example, persons with muscular dystrophy may qualify for different amounts (and
types) of support than persons with cerebral palsy. To take another example, people with
physical impairments may qualify for different types (and amounts) of support than do
people with intellectual impairments. In addition, access to some services may be
conditional on age. Both respite and physiotherapy were reported to be less available for
adults than for children.
Eligibility may also be in part determined by “severity” of a person’s disability. One
woman stated that eligibility to receive funds for a motorized wheelchair versus a manual
wheelchair was often determined on this basis. As she pointed out, those who fail to
qualify for a motorized chair often experience significant barriers as a result, barriers
which are not taken into consideration in the assessment process.
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Like narrow assessment procedures, eligibility criteria such as this one fail to take into
account the personal situation of individuals. Some individuals may need certain services,
but be unable to demonstrate need within the currently accepted framework.
I think the resources that are made available for people with disabilities are
an appalling and shameful chaos of criteria and eligibility requirements that
some people fit into and other people don’t fit into. It requires a tremendous
amount of sophistication to even begin to navigate through the system to
know where you might fit.
A broader scope of eligibility criteria is needed in disability-related supports and services.
Restrictive categorization based on disability type, age and medical diagnosis fails to
account for the complexity in women’s lives, and the social and economic barriers that
disable them. Premises for eligibility that account for these factors must be embedded in the
policy framework through inclusion of principles such as self-determination. Furthermore,
these must be reflected in the specific program and service guidelines.
Co-ordinated access
Most women had difficulty trying to access services because of a lack of information about
what was available. Some women reported they had been forced to wade through various
levels of agencies and government departments in order to get what they needed. One
woman suggested that the resources do exist, but the problem is the indirect routes women
have to go through to get them. She suggested that people with disabilities need to gain more
direct access to services, with less bureaucracy, and more control over available resources.
I suspect in my heart of hearts, that it’s not so much that we need more
resources, I think we need more control over those resources we do have. We
need less infrastructure and more direct access to what we need.
Because of the myriad of disconnected programs and eligibility criteria, the process of
accessing supports is often difficult and complex. Women with disabilities find they need to
be knowledgeable about which services are available, as well as how to navigate systems
funding and delivery. Some women are left with inadequate services not because these are
unavailable, but because they lack the expertise to access them. While many of the women
in this study said they did have enough support to “get by,” many also said this was because
they are vocal self-advocates.
I’m doing it now, I’m speaking out.... I’ll bloody make sure you’re listening.
I’ll go to the provincial level and if I don’t get through, I’ll go to the federal
level. I’ll make sure they’re taking down notes.… I’ll get supports.
Because of the sample selection procedure, many case study respondents were strongly
connected to disability organizations and the independent living and community living
movements. They may not be representative of the broader disability community. Many
recognized this, and felt that though they had self-advocacy skills and a sense of entitlement
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to support, not all people did. They worried that those who were not in a position to fight for
supports were not receiving what they need. One woman put it this way:
It also requires remarkable and sometimes extraordinary self-advocacy skills
to persuade people that you are a force to be reckoned with, that you are
entitled to, and worthy of, service. As someone who has really developed that,
I recognize it isn’t a skill everyone has.
The findings suggest information about the network of supports and services needs to be
more widely available. The routes of access to supports, and information about supports,
need to be direct, and involve as little bureaucracy as possible. In order to accomplish this, a
single entry point to provide comprehensive information about funding and services could
be helpful. Another strategy may be to hire service co-ordinators who could work for
women with disabilities to identify the available services which best match their needs.
Framework for benefits
Though an ideological basis for disability-related policy has recently been articulated in In
Unison, it is not yet reflected in the funding and delivery of disability-related supports and
services. Despite the fact that government increasingly shows a commitment to the
principles of independent and community living, which is realized through emerging
individualized funding programs, the distribution of funds demonstrates a lack of attention
to the whole picture involved in health and well-being. Moreover, different programs
reflect these principles to varying degrees, and mix them with principles that reflect
medical and functional models of disability through, for example, their eligibility criteria.
In some cases, government funding for short-term programs may support one approach for
a specified period, but is not supported over the long term. In addition, although there is
money for immediate support, such as attendant services at home, there are no measures to
ensure people’s future health, such as support to participate in activities that promote
fitness, or that are considered leisure or recreational.
For example, many women in this study regarded their access to programs that enable
them to stay fit as access to therapy. In fact, some women were emphatic that fitness
activities (such as swimming) should be considered therapy because these activities keep
them in condition. The women did not construe this as a “right” to fitness because they
could not use fitness as a rationale with funders. It should be noted, however, that fitness is
recognized in health promotion strategies as enhancing the health of the general population
and lessening the risk of heart disease and other illnesses. As with anyone else, the barriers
to fitness experienced by women with disabilities could result in future health problems.
This threat to the health of women with disabilities not only risks compromising the wellbeing of each of them, it will incur costs to health-care budgets in the future.
A more coherent philosophical base for policy needs to be developed. The transition from
institutional to community-based care, and from a medical to a social model of disability
needs to be consistently reflected in the network of related policies. Policies are needed
which account for a holistic view of health and well-being, and which consider the
importance of fitness and leisure to physical and emotional well-being.
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Addressing Access Issues
Ensuring that women with disabilities access the supports and services they need fosters the
capacity of support relationships to promote equality of well-being. As we have seen, in order
to promote greater equality of well-being, issues related to entitlement to supports, assessment
procedures, eligibility criteria, access and the framework of benefits must be addressed. This
will require policy and program development that questions the current ideological basis of
programs, and that is based on clear and consistent principles of human rights and criteria of
equality of well-being such as those outlined throughout this paper.
The main reason women with disabilities do not have the supports and services they need is a
lack of government funding. Since most women with disabilities are often not in a position to
purchase essential services on their own, they rely on government-funded programs. In recent
years, people with a disability have felt the pinch of government cutbacks in a number of
service areas. As described in the policy section of this report, provincial governments receive
less money and more responsibility for such services under the CHST. The redirection of
funds from institutional to community services does not reflect the actual need for services.
Moreover, while those currently enrolled for such services feel the impacts of this to some
degree, it is anticipated that the upcoming generation of consumers will face magnified
eligibility and access issues. This compromises the equality of support providers who are
expected to compensate for service gaps on an underpaid or unpaid basis, as well as
consumers who may be left underserved.
Government cuts are a real issue in the lives of these women. The call for more funding for
services was unanimous among respondents in this study. For some, the problem had
reached a crisis level. In the following situation, government had committed funding for a
project to move people from institutions to the community. This commitment did not last
beyond the actual project, however, and money was not annualized to continue over the long
term.
There were millions of dollars set aside for those people, and the big
promotion was, that the sky was the limit. Now we need this for my sister, and
they’re saying no, there’s nothing we can do. And you don’t even know who
you have to go to request it.... Now you’ve got the social workers saying to
you: “The bottom has dropped out of it, we only can do so much.” So where
is all the support now for people like my sister?
Social policy is needed that recognizes the importance of funding supports and services for
people with disabilities. While it is true that supporting people to live independently in the
community is more cost-efficient than medicalizing care in institutional settings, communitybased services need to be funded to the extent that the supply matches the increasing demand.
More money needs to be directed toward support services in general, in order that more
service options are available generally, and higher levels of service are available to those who
need more of them. Otherwise, the personal and social costs from diminished health and wellbeing will mount even further.
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Types of Services/Support Arrangements
There are a number of styles of service arrangement from which people with a disability can
choose. Women in this study primarily used individualized funding, managed care or agency
outreach, focus unit support and transitional housing supports.
Service arrangements have an impact on the equality of both providers and recipients of
services. It is here that much of the tension in the relationship between these two groups
emerges. The situation is complex. Sensitive issues prevail for both those who provide
services in homes and those who receive them. Women with disabilities require certain
elements to be in place to assure their self-determination, mutual recognition, security,
respectful interdependence, participation in democratized decision making and citizenship.
For example, they are at risk of abuse, theft and exploitation if they do not have certain types
of control over services; and of insecurity, discomfort and health problems if they do not
receive them when and how they need them. At the same time, those who provide support
services are vulnerable to issues such as prejudicial hiring, arbitrary firing, exploitation and
unclear boundaries.
Factors Affecting the Capacity of Support Relationships to Promote Equality
Some issues with respect to the rights of service recipients and workers are difficult to
resolve. In this section, we have tried to represent fairly the often-conflicting sides of a
number of these issues.
Service options
Much debate has arisen with regard to which style of service arrangement is best, or which
most effectively enables independent living. The findings in this research, however, suggest
that women want to have choices about the service arrangements into which they enter.
Women’s preferences varied in accordance with the types and amounts of supports they
needed, their respective lifestyles, personalities and living situations. Some women considered
self-managed care as the best possible arrangement. One woman describe her satisfaction with
a self-managed care program in this way.
I hire, fire, evaluate..... I’m assessed yearly for how much I need by
provincial home care.... Self-management is growing and growing. It’s even
up to me how much I pay an hour, how I pay, who I pay. Even the Royal Bank
works for me. I hired them to do my payroll.... I love it. I would never go back
on government program again, unless I absolutely could not hire anybody. It
works out so well for me.
Others, however, prefer another arrangement. Some women, while interested in the control
and flexibility that self-managed care allows, did not want the responsibilities that came
with it. In the remarks quoted below, one woman explains why she chose to receive
managed care from a home-care agency.
When you hire your own staff, you have the headache of hiring and firing. I’d
rather spend my time doing something constructive, like studying or working.
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Choice of support arrangements is important because women’s needs and preferences
change over time. For example, one woman was content to live (“for the time being”) in a
transitional housing building that supplied a range of personal and professional supports.
She felt that since she had never lived on her own before, she should have this environment
to learn what needs she has, and what she likes. Furthermore, she considered this to be a
temporary requirement and had begun weighing her options. Another woman explained that
she switched from managed-care to self-managed care when she and her partner purchased
their own home. With this change from one service arrangement to another, her needs for
support changed in terms of location of service provision, as did her desire for the privacy of
her family.
While some women believed they had choices over the service arrangements they used,
others felt restricted in their choices, in part, due to lack of availability. The sample used in
this study does not reflect the actual distribution of available choices, nor is the availability
of individualized funding programs consistent from one province to another. In Manitoba,
for example, of the thousands of people who receive disability-related supports, only about
100 of them access individualized funding through the self-managed care program. In the
sample used for this study, three of four respondents in Manitoba used self-managed care.
Women with disabilities need a range of service options from which to choose—options
that fit their lifestyle and needs. Women with disabilities say they should have the option
to access services under individualized funding, with whatever support they need to make
it work for them and the option of flexible, managed care that allows them choice and
control. Furthermore, respondents suggested that not only should they be able to make
choices between existing arrangements, but there should be more, and different options
available to them than currently exist. One suggestion was the use of individualized case
management, where a case manager, who works for an individual with a disability, coordinates her or his access to services.
There needs to be more individualism and case management. There’s such
fragmented services, lack of case management for individuals with
disabilities where case manager would integrate and co-ordinate services
and integrate communication between suppliers of services.
Quality of available service options
Choices with respect to service arrangements may also be restricted by the quality of the
available options. The quality of support programs/types varied among the provinces.
Hence, many of the respondents in this study felt as if they did not have good alternatives
from which to choose. In Manitoba, for example, women described managed care as less
desirable, because service management agencies there did not give clients choice and
control with regard to the workers sent to them. In addition, these agencies had rigid,
inflexible scheduling and task descriptions. In Newfoundland, where similar agencies
introduced a greater degree of client choice and control, women with disabilities indicated
greater satisfaction with this option. In Newfoundland, managed-care agencies have had to
compete with self-management programs for clientele. One way in which they have done
so has been to offer such control over services. The Newfoundland experience illustrates
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that people with disabilities want choice, control over and flexibility of the services they
use. Self-management is merely one model conceived to implement these principles.
While most of the women spoke highly of self-managed care options, some found the
administrative tasks, the liability and the risk that they would be left without services
combined to make such programs too much of a burden. Of those who were using selfmanaged care, approximately half felt they would be better off with administrative support.
Of those who used managed care, nearly all said they did not choose individualized
funding because the administrative burden was too much trouble.
I’m on self-managed care. It’s a wonderful program, allows me flexibility.
But it’s a pain in the butt because I’m responsible for paperwork. I’d throw
that away. I’d like to have the control over hiring and firing, but hand the
administration back to the provincial government. If they would leave us the
control. Right now it’s all or nothing.
Other women did not have a problem with requirements to report per se. In some cases, the
procedures appeared more complicated than they needed to be. The complicated ways in
which services are arranged at the program level seem to be designed for the convenience
of the funder, not the recipient of funds. This was especially a problem for users of selfmanaged services who had to deal with payrolls and reporting procedures.
The format [of payroll reports from the bank] isn’t acceptable to the
individualized funding program, which means I then have to pay an
accountant to basically take the apples and put them into oranges, or put
them in the appropriate category so all the reports that go into the funder are
in the same format. To me it seems inefficient, but I suppose necessary from
the bureaucratic standpoint. So reporting is a bit of an annoyance.
If some of these options were organized differently, they might become real choices for
more consumers.
Regardless of the terms under which women with disabilities receive supports, they want
their arrangements to be structured in ways that enhance their equality including:
•
choice in which individuals provide support;
•
control over tasks performed;
•
flexibility of services; and
•
portability.
Choice in which individual’s provide support
As noted earlier, equality for women with disabilities is promoted when they have control
over who provides them with support, regardless of whether they are employers or recipients
of agency care. Women achieve such control more easily under some styles of service
arrangement than they do under others. They have the most control over the delivery of their
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services when these are provided under individualized funding. Funding should, therefore,
be directed in ways that will expand the availability of this funding option so all the women
with disabilities who would choose it may do so. Furthermore, policy should recognize that
women have the right to choose staff when they receive outreach supports. Thus,
government guidelines to agencies could require that agencies offer clients as much
flexibility and control as possible in this regard.
Strategies must be developed which ensure that the enhancement of choices for women with
disabilities does not entail that workers become subject to discrimination or unfair firing.
Strategies of this sort might include programs that aim to educate employers/service
recipients about racism, human rights codes and employment equity with regard to the
sector that serves them. In addition, these strategies might involve mechanisms to resolve
disputes or conflicts concerning alleged discrimination and enforcements to ensure that
workers are protected. Women with disabilities and workers could access these mechanisms
when such situations arise. In individualized funding situations, the administrators of
services (usually independent living centres) or third-party community-conflict resolution
organizations could manage programs of this sort.
Control over tasks performed
Respondents agreed that regardless of whether consumers use individualized funding or
agency services, they should be the ones who decide which tasks staff perform and when.
Women with disabilities were emphatic on this point. Furthermore, their staff strongly
supported the rights of women with disabilities to self-determination and felt they exercise it
appropriately when they give direction to their staff. Those whose jobs involved a particular
task (e.g., attendant care at the local swimming pool) felt that clear and undisputed
boundaries existed between them and the women for whom they worked. Those who
provided a range of types of in-home services, from personal care to housekeeping, felt that
the diversity of tasks was appropriate. Furthermore, they believed it was appropriate that
their clients/employers have the right to decide what tasks their workers will perform and
when they will perform them.
To the greatest extent possible, this control should be built into programs. To avoid
confusion in these relationships of support, mechanisms should be in place which clearly
outline the range of tasks consumers and staff consider appropriate. In addition, strategies to
promote communication, or address conflict, should be in place and readily available to the
parties engaged in these relationships.
Flexibility of services
Of the currently available service options, individualized funding allows women with
disabilities the most flexibility. Promotion of these options increases the equality of women
with disabilities. Other styles of service arrangements could be designed in ways to allow
consumers as much flexibility as possible. Workers in this field acknowledged that negative
impacts of flexibility on staff appear difficult to address. As the previous section indicates,
workers were most concerned that their employers/clients be aware of the ways in which
flexibility can affect them, and that they take these into consideration. Strategies to promote
better communication in these relationships, and mechanisms which provide resources and
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train consumers to be “good” employers or service managers could address some of the
workers’ concerns.
Portability
Women with disabilities need their supports to follow them, rather than follow their
supports. If women with disabilities are to participate meaningfully in the community, they
must be enabled to take their support services with them into a variety of environments.
Those who use services that are tied to their living arrangements must have options which
include the choice to have the accompaniment of staff to community places, or access to
outreach services when they need them. Women with disabilities are entitled to enjoy the
rights to be where they want and to sleep where they want that others already enjoy.
With respect to travel, one woman suggested that some of the barriers which women with
disabilities experience, and the issues which attendants in the study mentioned, could be
addressed through the creation of a national attendant service registry. Through such a
registry, travellers could make arrangements in advance. In addition, home attendants would
feel less pressure to take on the stresses that can arise when they travel with their employer.
In general, portability of services was not a major area of concern for attendants. Some
individualized funding attendants spoke of the difficulties with respect to travel. They
reported that travel with an employer meant long, difficult hours with unclear boundaries.
They nevertheless acknowledged that they could choose not to accept work that involves
travel.
Location of service arrangement
Respondents felt that when they have choices about where they will live and receive services,
their well-being is promoted. In some support arrangements, services are linked to a person’s
housing option. This is the case with “focus units” and SSLUs (apartment buildings with inhouse service provision for tenants with disabilities). Some people with disabilities find they
can only access the supports they need in this setting; thus, restricting their choices about
where and how they live. Furthermore, even when they can access services in their private
homes, choices may be restricted by the lack of physically accessible housing and high
housing costs. In addition, many people are required to move to, or remain in particular areas
(usually cities) in order to access the supports they need. For these reasons, people with a
disability have recommended that government funds be directed to create new, accessible
housing.
More housing for people with disabilities. Right now the federal and
provincial governments aren’t keen to start new housing projects. People are
stuck where they are living and with the supports they have even if they hate
it. People need to know they can change their life if they need to. I didn’t like
the feeling of not being able to move. People need self-control and choices.
One respondent recommended that funding be made available so people with a disability
could organize and create new service options that would give them more choices about
where they live.
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Hopefully, there will be enough funding for individuals to get together and
choose where they would like to live versus going to places already
established—and sharing services with people in areas they choose.
Addressing Support Arrangement and Delivery Issues
The main issues associated with support and service delivery, and arrangements are
associated with the available options and assurances that women are able to make real
choices among these options. This means an expansion of options such as direct and
individualized funding, which are presently available for a limited number who qualify
under very particular eligibility criteria. It also means improving the quality of other options,
including managed outreach supports and supported and transitional housing according to
criteria women with disabilities have outlined—choice over support providers and support
tasks, flexibility and portability of services, and democratized decision-making processes.
Public administration
There are barriers to such processes. Some respondents felt that “the system,” or government
personnel who promote and develop support options and assess eligibility, have their own
preferences with regard to which options should be available, and to whom. In an interview
for this study, a policy expert from a disability organization in one province suggested that
while disability organizations tend to favour strongly the self-managed care option, the
authorities in charge of these programs do not promote self-managed care. Disability
organizations speculate that this resistance may be due to paternalistic attitudes (such as the
belief that disabled people cannot really handle the responsibilities of self-managed care)
and fear of job loss that would result from lessened workloads and redistribution of the
responsibilities involved.
In one situation, a woman with a disability and her family believed they experienced
pressure from the government to switch from self-managed (family-managed) care to
home-care agency services, or a group home. This woman and her family felt the
authorities blamed them for managing the care badly. According to the family, they were
doing the best job possible, given the labour constraints with which they were working.
They also suspected that punishment was exacted against them because they advocated on
behalf of their family member, rather than accept the situation. As one family member of
this woman explained:
So now they’re...trying to put [home-care agency staff] in these homes, take
out the rest of the workers from these homes, and force people like myself to
just give up on my sister and put her into a group home. Because I’m having
such a problem with overturning staff working under the conditions they’re
working under, no workers and no pension, low rate of pay.
It is important to note that the woman in this situation had an intellectual impairment.
While the sample was too small to indicate a clear finding, it is possible that women with
intellectual disabilities and their families face greater policy and program barriers in their
efforts to maintain control over their supports than women with physical impairments do.
This issue is worth further investigation.
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Impacts on workers
Another serious issue arises with respect to the situation of workers within these
arrangements. Like the women with disabilities in this study, paid support staff valued some
aspects of individualized funding arrangements, and other aspects of managed care
arrangements. Many paid support workers liked to work in situations where the disabled
woman was their employer. They felt this arrangement allowed them choice and flexibility
and facilitated respectful, caring relationships. Nevertheless, they pointed to a correlation
between fostering equality of women with disabilities and compromising equality for support
workers. As is evident in the following section, the organization of labour in the program
types that most promote consumer equality seem to offer the least benefit and security to
workers. Some of the very qualities of service delivery that women with disabilities say are
criteria of their equality—control over who they hire, flexibility and portability—may
increase workers’ vulnerability and job stress. This polarization does not have to happen.
Strategies need to be developed that promote the capacity within support relationships for
equality of well-being of both parties.
This study alerts us to the need to pay attention to the experience of workers. A significant
number of respondents, who were paid support providers, dreamed that one day they
would work in some form of institution. In the context of disability rights and the
independent living movement, this suggests an emerging dilemma. It should be noted that
in Newfoundland, where women with disabilities seemed to have the most options, the
workers had the lowest pay, the least security and the fewest benefits. In a province, such
as Newfoundland, with high unemployment and low government-stipulated pay rates,
there may be a lot of people willing to work under these conditions. Interestingly, in
Newfoundland, it did not seem to make much difference to worker security whether they
worked for agencies or directly. Social policy must address the labour concerns of staff in
order to ensure that they have access to equitable wages, benefits and protections that are
consistent across the styles of service arrangement.
Multiple roles
The question of whether or not family members should be allowed to work as paid support
staff for members of their family is an issue in service arrangements and staffing. Policies
relevant to the issue vary from one care arrangement to another and from province to
province. This situation emerges as an issue in the context of individualized funding
programs. Generally, spouses are not eligible to be paid for support; however, other family
members may be.
Two positions in this debate have emerged. Both positions were raised during interviews,
albeit briefly and incompletely.
Some people think family members should not be paid as support providers. They argue that
in such a relationship both the provider and the receiver of support would enter into
uncommon positions of dependency to each other. This dependency might make both of
them vulnerable and restrict their self-determination. In other words, it might compromise
their equality. If persons with disabilities (especially those facing challenges advocating for
themselves) receive supports from family members, their access to, choices about and
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control over those supports may be compromised. It may be extremely complicated to
confront or dismiss staff if they are one’s spouse, parent or sibling. Furthermore, the
emotional complexity, history and power relationships within a family could be exacerbated
within a paid relationship. In some cases, families may also have control over a person’s
living space, their finances and their right to consent to medical treatment. Reliance on them
for paid care could amplify existing imbalances of power—and abuses of power. Families
do not always concur with individuals about what is in their best interest. Furthermore,
situations of abuse arise in families. An absence of outsiders, who might provide support,
could increase the isolation of people living in abusive situations, increase the likelihood of
abuse and reduce the chances that abuse will be reported.
Relationships of this sort may also disadvantage family members who are paid to provide
support. They may feel pressured to take on responsibilities and stress in their lives that they
do not want. As one woman who provides paid support to a family member said:
I’m not satisfied. Definitely not. I’m thinking of quitting but my sister-in-law
depends on me. Some pre-arrangement is needed. I’m definitely satisfied with
the support I provide, but I feel that it is too much. Too stressful. I need to do
too much.
In this study, some paid family members said they might not have chosen paid employment
if their relative had not needed them. For instance, as one woman explained:
I don’t do this for the income, I’d rather be home with my kids than work.
Within relationships in which a family member provides paid support, a blurring between
formal and informal support roles could occur. Paid roles may lead family members to take
time away from responsibilities to other family members, and to their own leisure time. In
addition, family members might feel obligated to provide considerably more support than
that for which they are paid. Furthermore, other family members may reduce the amounts of
informal support they provide for their family member with the disability because they see
the role of supporter as formally belonging to one person.
On the other hand, both consumers of services and family members wanted the right to
make the choice about formalizing a support relationship within families. They implied that
rules prohibiting this choice were paternalistic and removed their right to self-determination.
In the context of other family-related transactions, such as paid child care, home repairs or
home businesses, which variously carry some of the same risks as those listed above,
families may choose to hire other family members. Why, then, is provision of disabilityrelated supports any different? Indeed, for people who live in rural areas and have less
access or choice regarding support provision, the right to hire family members may be a
necessity, rather than a choice.
Some women may prefer to hire family members, rather than strangers. They may feel safer
and more comfortable when they hire people who love them to provide intimate care and
spend time with them in their homes. Insofar as they pay the family members they rely on
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for support, this may equalize relationships by moving them from situations of dependency,
to reciprocal exchanges of resources. Nevertheless, women with disabilities in this study
who supported the right to hire family members cautioned that safeguards would need to be
in place due to the complexities outlined earlier. As one woman explained:
I would support hiring family members, but there would have to be a system
where the person receiving the support felt in control without feeling
threatened. If there’s an issue, what do I do? Squeal on my dad? Then it blurs
the relationship I have with that family member and other family members too.
Even the women who said they preferred not to work commented that their formal
arrangements as paid family members had significant advantages. They felt, for instance, that
since they would do the work anyway, they might as well get paid to do it. In addition, they
believed they knew better than other people how to provide their family member with the
appropriate care; thus, they would have less reason to worry about their loved one. One
woman commented on change to policy that allows family members to be paid.
For me that’s a good change, I know she’s taken care of. I know she’s eating
and not out of a can. I know her machines are taken care of, and we don’t
worry about it.
Arrangements of this sort worked well in relationships in which both parties put energy into
negotiation of the responsibilities and different roles involved. One respondent reported:
We have to draw the line between what the sister-in-law does and the worker
does.... She does understand that my kids need me. Once she asked me:
“Does your job come first?” I said: “You come before the job. I don’t come
to get paid; I come to get away from everything at home.”
In one situation, a woman had worked as a paid attendant for her partner before they became
involved romantically. She lost income when she became disqualified as a paid support
provider; yet, she continued to provide the same kind of support. Although she had become
financially dependent on her partner as a result, she was not recognized as a dependant within
the federal tax system, which did not distribute the same entitlements to individuals in lesbian
and gay relationships as it did to those in heterosexual relationships. As she described it:
[Changes in my partner’s service arrangements, from paying out of pocket,
to agency care, to individualized funding] had a big impact on me, because I
used to get paid and now I don’t. I’m caught between a rock and a hard
place, because if we didn’t tell the direct funding people about the nature of
our relationship, if we lied, I could get paid. We don’t want to do that, so we
lose at the provincial level and at the federal level. Because at the federal
level our relationship isn’t recognized anyway, but at the provincial level it
is, but if we declare it then I don’t get paid. Basically, I’ve lost my income,
but I still do the work.
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Debate continues with regard to the question of whether people with a disability should be
entitled to hire their family members as support providers. It would seem that insofar as
equality for women includes their right to make decisions for themselves, women with
disabilities must decide whether or not they will hire a spouse, parent or sibling as one of
their support providers. In order to protect both consumers and their family members, the
potential difficulties and harms that may occur should be clearly outlined. Furthermore,
mechanisms should be in place to ensure that both parties make an informed decision, and
do not feel under pressure to give or receive services in this arrangement. In addition,
mechanisms should be in place to address situations of conflict.
Organization of Labour
The organization of labour also impacts the equality in relationships of support. These
concerns affect both the consumers of services and those who provide services to them. The
working conditions, rate of pay, job benefits, training, career opportunities and job status of
the paid support workers who participated in this study had a significant, and direct impact
on their equality. Furthermore, these conditions indirectly have an impact on the equality of
consumers and unpaid support providers. In addition, the organization of labour gives rise to
some major areas of tension in relationships of equality between consumers and providers of
services, including disagreements around institutionalization versus community-based care,
and unionization.
The respondents who work as personal and home support providers tended to do so in fairly
marginalized employment conditions which compromised their security and status in their
communities, and the relationship with the women for whom they work. Both workers and
their clients expressed concern over this situation. Within the framework of the current
system, structures do not seem to be in place with which to resolve these issues, except at
the expense of people with disabilities. As noted above, both groups find this state of affairs
unacceptable.
While the sample of professional service providers was too small to indicate any clear
findings, it appears they face different, perhaps fewer issues of concern with respect to
labour conditions. They are more apt to have adequate pay, benefits, training and career
opportunities than in-home support providers.
Factors Affecting the Capacity of Support Relationships to Promote Equality
Rate of pay of support workers
The rate of pay of support workers is generally low, though it varies. This has negative
consequences for workers’ security, as well as their choices and opportunities in life.
Workers in St. John’s, for instance, were paid as little as $5.60 an hour. Those in Winnipeg
averaged about $9 an hour, and those in Toronto averaged about $12.50 an hour. These are
the average rates of pay for support workers in the major cities of the three provinces studied
and are probably higher than rates for this work in other parts of these provinces. A number
of factors seem to determine the pay rates for attendants including differences in standards
of living between and within provinces, different policy standards set by ministries and the
type of employment arrangement under which support is provided.
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The most well-paid attendants worked for public agencies and belonged to a staff group.
That is, the more institutionalized the care, the better paid the staff. In fact, of the paid
support providers who participated in the study, the one with the highest pay ($12.50 an
hour) worked in a semi-institutional transitional housing unit. She was one of the few
support workers in the study who had a benefit package. Some paid support providers were
well aware that the low rates of pay they receive correspond to the move toward communitybased services. One woman said:
It’s no big secret we are getting ripped off. It’s no big secret that we are a
labour force that’s doing jobs that nurses had. I don’t feel I’m being fairly
treated.
Addressing the inadequate pay of support workers would promote equality not only for
workers, but also for women with disabilities. Governments need to revisit the pay scales
and pay freezes of workers in this sector. Funds must be made available to raise the hourly
rate of pay, as well as to take account of the unique situations which home care involves. In
addition, issues regarding one-hour shifts, on-call work and night shifts must be accounted
for in assessments of level of need, in order for agencies or employers with disabilities to
compensate adequately those workers who fill these time slots.
Benefits and workers’ compensation
The lack of employee benefits and workers’ compensation coverage for workers in this
field signals a missing piece in current social services policy. Many workers are not
covered; yet, they are at high risk of injury. Policy should ensure that appropriate levels of
funding for benefits and workers’ compensation are allocated to managed care programs
and individualized funding programs. This is happening, to some extent in some provinces,
but has not been fully implemented.
As the trend moves away from institutional care to community care, the likelihood that
workers receive these protections declines. In this study, workers in the most institutional
settings were the most likely to receive benefits. None of the women who worked directly
for consumers22 had benefits, and few qualified for workers’ compensation. Those who
worked for managed care agencies tended to receive workers’ compensation coverage but
not benefits, although some agencies do offer benefits to staff. One woman who participated
in the study worked at an agency that provides benefits; however, she did not qualify for
these because she worked part time.
The issues of workers’ compensation are complex. The control women with disabilities have
over tasks performed by support providers may be compromised by rules and regulations
tied to worker protection. Some of these protections are appropriate and necessary and
devised to avoid injury. However, sometimes they seem arbitrary or misplaced within the
context of these relationships. Furthermore, such guidelines sometimes remove choices from
workers, as well as consumers. For example, one woman who had workers’ compensation
coverage said she felt pressured to avoid a certain task her client needed her to do. She
feared that since the task fell outside of her job description, she would not be covered if she
were to injure herself in the course of performing it. Note that the task to which the woman
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referred was not an extraordinary one, such as moving heavy furniture. To the contrary, the
task was tipping the woman’s wheelchair up and over an uncut curb. She remarked:
You’re covered if you get injured doing the things you are supposed to. At her
house, there’s no cut curb. I could possibly hurt myself getting her over the
curb.
She went on to remark that she did this regularly, despite the lack of coverage, because she
and the woman for whom she worked would have been unable to leave the house if she did
not do it. Other respondents pointed to similar guidelines prohibiting workers from cleaning
mirrors, dusting under table ornaments, etc. None complained of guidelines that seemed
appropriate to them, such as those concerning heavy lifting. It should be noted that workers
and consumers alike supported protections for workers, but felt that, within reason, such
protections should not compromise the self-determination of either women with disabilities
or workers.
Women in both groups stressed that benefits and protection for workers should not be
gained at the expense of women with disabilities. They believed that women with
disabilities should not pay out of their own pockets for such coverage. Furthermore, they
believed worker protection should not compromise the level or type of service received.
Job training and support strategies
The importance of job support and training to workers was somewhat ambiguous. Workers
appreciated support, especially from supervisors and co-workers. Some attendants who did
not have access to co-workers or supervisors (e.g., those who work under individualized
funding) indicated that they would welcome support from other paid support providers,
perhaps in the form of an attendant association. They noted that workers in this sector would
probably not organize in this way because most of them did not identify as attendants, nor
see this as permanent employment.
Some workers regarded access to training in injury prevention as a way to promote the
safety of support providers. Courses in raising awareness and disability issues would
sensitize support providers to the concerns of their clients, such as the systemic
discrimination confronted by people with a disability, and might promote more empathic,
better relationships between them. They agreed that some types of training, most notably
occupational health and safety training, would be beneficial. To reiterate, most attendants
believed that training programs that medicalized disability should be recognized as
inappropriate. Some attendants believed that access to awareness training about disability
issues from a disability rights perspective, and to training in conflict resolution/prevention
would be assets. These courses, they suggested, should be readily available, free and,
where appropriate, workers should receive remuneration for their time attending them. In
addition, attendants thought that consumers themselves should have access to training and
instruction on how they can become better employers and on how they can resolve
conflicts.
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Addressing Labour Organization Issues
Addressing the working conditions of paid support providers, while still ensuring that
women with disabilities can exercise their right to control their services will not be simple.
Indeed, these seemingly conflicting needs have become a source of pronounced
disagreement between the two groups of women. Paid support providers believe that women
with disabilities do not want to think about these issues because they fear they will lose the
right to live independently, a right for which they struggled so long and hard. Some are
angry and feel their clients/employers disregard them and their concerns. Some (even as
they promoted and supported independent living) claimed that the Independent Living
Movement is adversarial toward attendants. They felt that people with disabilities
approached issues surrounding support services with an “it’s us or you” stance. They
contended, moreover, that people with disabilities must begin to advocate for support
workers’ rights alongside their own.
Women with disabilities, on the other hand, felt that workers blamed them for working
conditions over which they had no control. They did worry, as support providers suggested
above, that their own rights and access might be compromised by attention to labour
concerns. They were cynical about the commitment of governments to provide enough
resources that they could get the supports they needed and ensure adequate pay and benefits
for the workers. Many also expressed concern for their workers’ situation. They felt,
moreover, that the low status of their staff reflected their own devalued status in society.
Consumers as employers
Paid support workers felt that service recipients with a disability need to take their role as
employers more seriously. When they worked for good employers, who paid attention to the
fact that they had responsibilities toward their workers, and who took workers’ situations
and motivations into account, problems associated with their jobs were reduced. As one
worker put it:
People need to learn how to be employers. They don’t know how to direct
their own care to manage employees. Working for someone who knows how
to treat you as an employee is very different from working for someone who
doesn’t.
Other paid support workers were not as concerned with these issues. They were satisfied
with part-time work, and felt they were at stages in life where the types of hours they were
required to work suited them. They considered their jobs as temporary or transitional. It
should be noted that the workers who expressed the most satisfaction with their work and
the least concern for these issues were also the ones who hoped to move on to more
institutionalized work. They were less politicized, less aware of disability issues in general
and less likely to advocate for disability rights. They did not seem to understand the concept
of independent living. The workers who were frustrated and angry about their jobs were
those who were most attached to the disability community, and who upheld the right to
independent living.
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Some women with disabilities in this study were very aware of, and concerned about,
worker issues. But, they felt helpless to address these concerns. They indicated that they
need services and they need them to be delivered in a certain way. Many had lived without
adequate services for an extended time and were determined not to return to that
unacceptable condition. Furthermore, they felt that even when they were in control of the
dollars for services, programs and policies determined their eligibility and the levels of
funding they received. Nevertheless, many women with disabilities knew it was in their best
interests, as well as the interests of their workers, to find solutions. One woman with a
disability remarked:
The work support people do is very important, and is unrecognized, underutilized and underpaid. I’ve done a course on it, and I’ve done a lot of
advocacy. I’d like to see a compromise worked out in terms of meeting needs
of people with disabilities and workers.
Creative policies need to be developed which address these issues. Because of the
polarization between women with disabilities and paid support workers that increasingly
exists, a team comprising members of both groups might strategize most effectively around
these issues. One attendant suggested embarking on a dialogue between women with
disabilities and workers. As she noted:
What I would love to do is just to talk more and get together more. When
attendants and consumers get together we fight. Usually workers are tired
and pissed off, and consumers feel misunderstood and have their own crap to
deal with. I’d like to see what biases the attendant care community has, how I
treat [consumers] and what I expect, to figure out a more creative way to
work together. We hang out with them more than our friends. We hang out
with their kids.
A woman with a disability suggested that a support network be developed for people who
use direct funding in order to share workers. A network of this sort would enable people
who use individualized funding to offer workers better hours and working conditions. She
described the network she imagined in this way.
I would like to form a support network around people trying to find their own
workers. There’s an informal support network but they meet during the day.
I’d like to make it more formal—sharing workers—assist them to get more
hours, and assist other consumers. It could be a collective of
consumers/employers who as a group would contract workers.
Institutionalization versus community-based services
The relation between rate of pay and the degree to which services are institutionalized is
emerging as a source of conflict between women with disabilities and their paid staff. Due to
the way the system is currently arranged, the more independent women with disabilities are,
and the more control they have over their own service provision, the less secure are the
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working conditions of their staff. In other words, the equality and well-being of one group is
positioned in opposition to the equality and well-being of the other group.
Over the past few decades, service options for women with disabilities have grown
considerably. Many of the women in this sample had progressed from institutionalized
settings, to semi-institutionalized settings and on to community-based contexts of support.
The less institutional the arrangements, the more control, independence, security and
opportunities there were for a good quality of life. As the analysis throughout this report has
shown, control, independence, security and opportunity are conditions for the equality of
women with disabilities. Over the last decade—one in which these conditions have been
promoted—the equality of women with disabilities has increased; it will continue to increase
if these options continue to grow and improve.
The conditions of employment for women who provide supports have deteriorated as the
opportunities and independence of women with disabilities have increased. Women who
worked in the old-style institutional settings had better pay, benefits, access to training and
support, structured work schedules, access to co-worker support, more work and a higher
employment status overall. With the progression to community-based supports, the status of
women providing such supports has consistently diminished. In short, the equality of
support workers is in jeopardy.
Many personal care and home-care workers described their career opportunities as limited. As
one put it:
Really it’s a dead end job. There are no opportunities, but at my age what
else do I need?
Indeed, those who think there are career advancement opportunities in this field conceive
them in terms of a transition to more institutional settings. This frame of mind is indicative of
the severe tension between the needs and goals of these two groups. One worker in the study
stated:
If I want to, I can go to work for home care, now I have the experience and I
have experience with people with disabilities, go into nursing homes and that.
Policy must be developed which recognizes and addresses this tension. It is essential that the
equality of women with disabilities is promoted; however, their equality need not, and ought
not to come at the expense of the equality of their staff. Some strategies to alleviate this
tension seem simple and clear. One strategy is to increase the policy-stipulated wages of
support providers. In addition, other innovative, new strategies should be introduced, such as
the creation of freelance support providers’ guilds or associations that could manage benefit
packages and workers’ compensation schemes.
Unionization
In discussions of staff pay and benefits, some women broached the issue of unionization.
Unionization was a sensitive topic that very few women addressed; those who spoke about it
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did so very carefully. None of the home-care workers participating in the study were
members of unions, nor did any of the women with disabilities who participated receive
unionized services, although some had in the past. The majority of workers did not want to
unionize. They regarded unionization as a betrayal of their clients. Furthermore, they
believed unionization complicated the job. One agency worker said:
Staff don’t want it. Why bring one in if you don’t need it? Unions come in
with their own problems and guidelines and create more problems.
Nevertheless, even workers who resisted unionization of their work recognized that the
introduction of a union could result in wage increases for them. As another woman noted:
Some people are tangled up in unions, and some aren’t. I know a union guy,
he gets $16 an hour, and I get less than $6.
In addition, workers recognized the bargaining power they could gain from membership in a
union. For instance, one remarked:
I gotta do all those tasks a nurse does, except injecting, and they’re going on
strike to make $25 dollars an hour. I only make $5.67.
The women with disabilities who broached the issue of unions felt unionization
compromised their services. Two of the women, left without essential services during
strikes, were adamantly opposed to unionization of support workers. One woman explained
her transition to individualized funding.
I went on it because, when home care went on strike, I swore I would never
be stranded at home for three days because I had no staff coming in. They
were out, left us high and dry. There were a lot of us, let me tell you.
Another woman believed that unions tend to restrict the flexibility of services and the
control over them.
The last few years I was there, they unionized. There was a bit more to it than
wages and benefits and stuff. It was probably one of the most difficult times I
had. You need a lot of knowledge about labour laws and stuff to negotiate a
contract. When I looked at the agreement with Steelworkers it was really
medical and really institutional. I don’t know what else to tell you, except
individualized care is more flexible.
Only one employer advocated for unions: the family members of a woman with disabilities
who act on her behalf as the employer in an individualized funding arrangement. They did
not want their relative to be left without services during a strike, or be restricted in their
work with inflexible care provision guidelines. However, they felt something drastic needed
to be done because they were so outraged at the situation of their workers. As one family
member asked:
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Why is it that workers’ compensation is put in place for [home-care
agencies] and not our workers? Why is workers’ compensation put in place
only for the unionized people? Unionized got everything. They’ve got the
whole works, medical the whole works. As far as I’m concerned, those people
are doing the same job as our workers. They stay together. But people in the
homes like this; the staff is not allowed to strike, to protest this. This is a
private home. I think they should be, and say: “To hell with the government,
we have to do this to be recognized.”
Workers were concerned that unions impose overly rigid job descriptions on workers.
According to one paid support worker, unionized agencies and projects were no more
popular among workers than they were among consumers. Workers believed restrictions
with respect to tasks they were permitted to perform not only affected them, they also
disempowered users. When paid support workers are subjected to rigid restrictions with
respect to task performance, their involvement in the negotiations that govern their roles in
these intimate settings is taken away from them. Furthermore, under some circumstances,
such restrictions increase the job insecurity. If they choose to perform tasks outside of their
job description, they could face reprimand or lose their benefit coverage if they were
injured.
There is a clear and recognized need to address the low pay many support providers receive,
their lack of benefits and job insecurity. A worker remarked:
I’d like to see a compromise worked out in terms of meeting needs of people
with disabilities and workers.
In this study, neither women with disabilities, nor their workers seemed to think unions
would offer mutually agreeable terms. In traditional work settings, unions aim to equalize
the balance of power between workers and their bosses by protecting the former and giving
them bargaining power over the latter. In the case of community-based settings, however,
the “bosses” are persons with disabilities, who are also without formal power.
In some settings, and in the case of some job types, unions work well for their members.
However, in the case of disability supports, where governments fund the services that
control the rates of pay workers receive, other measures may be more effective. Further
research and analysis is required to determine what these alternatives might look like. One
woman suggested the formation of co-operatives for attendants and home-care workers. As
she put it:
I would like for there to be better linkages. I’m not talking in terms of a union
so much as to be part of some co-operative enterprise, whereby attendants
would have access to resources and to peer support that I don’t see them
getting. And coaching, and mentoring. That sort of thing.
9. POLICY DIRECTIONS
Analysis according to the six criteria of equality of well-being points to some of the impacts
of social policy on equality and inequality between women in relationships of support and
for these women in society. The factors that account for equality, outlined in the previous
chapter lend themselves to a number of clear, feasible policy directions for the future.
Access to Disability-Related Supports and Services
•
Women with a disability in this study were clear in their demand for policies that promote
their independence and self-determination including more funding for disability-related
supports, increased service options and higher levels of service for those who need them.
Furthermore, they called for policies that account for a holistic view of health and wellbeing, which consider the importance of support for fitness and leisure to physical and
emotional well-being.
•
Policy for the provision of supports and services to people with disabilities must be
coherent. The network of related policies that govern their lives must consistently reflect
the social transition from institutional to community-based care and the philosophical
move from a medical model of disability to a social model.
•
The assessment procedures of the various programs and services must be reviewed.
Many of these ought to be redesigned to account for the personal situations of recipients.
Within a coherent policy framework based on principles of independent and community
living, these procedures would be designed in ways that enable persons with disabilities
to participate in the determination of their own needs, in the context of their lifestyles
and relationships.
•
The scope of eligibility criteria for disability-related supports and services must be
broadened. Restrictive categories based on disability type, age and medical diagnosis fail
to account for the complexity in women’s lives, and the social and economic barriers
that disable them. Premises for eligibility which account for these factors must be
embedded in the framework of policy through the integration of principles such as selfdetermination; furthermore, these principles must be reflected in specific programs and
service guidelines.
•
Women with disabilities should not need to be experts in policy in order to get the
supports and services they require. Information about the network of supports and
services must be made widely available. Furthermore, routes of access to these supports
and services must be direct; that is, access to them should involve as little bureaucracy as
possible. One strategy which could accomplish this is the introduction of a single entry
point to services, one which has information about all of the services available at any
given time. Another strategy that could be implemented is the provision of service coordinators accountable to women with disabilities to identify what services are available
and best match their needs.
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•
Freedom of speech is a citizenship right that must be enforced proactively. Safeguards
must be in place to ensure that people can engage in advocacy without fear of reprisal.
When support to people who depend on it for their health, safety and equality is
withdrawn, their well-being could be seriously compromised. Mechanisms must be
incorporated into systems to ensure that people are not punished in this way. These
mechanisms should include the education of those who work in the system to respond
respectfully to advocacy. In addition, protections could be built into the system that
prevent the arbitrary removal of a person’s eligibility for services. Conflict resolution
and unwieldy appeal procedures could also be put in place.
Types of Services/Support Arrangements
•
Consumer control of services is more easily achieved under some forms of service
arrangement as opposed to others. Consumers have the most control over their services
when these are provided under individualized funding (self-management). Funding should
be distributed to increase the availability of individualized funding so people who want
this alternative can choose it.
•
Women with disabilities must be given the option to receive services under
individualized funding, with the supports they require to make it work for them or to
receive services under flexible managed care that stipulates provisions for recipient
choice and control. Furthermore, there should be additional options. One to consider is
individualized case management, where a case manager who works for a certain
individual with disabilities co-ordinates the individual’s access to services.
•
Social policy must be developed which addresses the labour concerns of staff in order
to ensure that they have access to equitable wages, benefits and protections. These
conditions of employment should be consistent across the various forms of service
arrangement.
•
New service options should be designed so people with disabilities have more choices
with respect to where they live and how they receive services. To facilitate the
implementation of these options, funds should be redistributed in order that more
accessible housing can be built.
•
Policy should uphold the right of women with disabilities to choose their staff when they
receive outreach supports. Ministry guidelines could require agencies to allow their
clients control and flexibility with respect to which workers provide them with supports.
•
Strategies should be developed to ensure that support workers do not become subject to
discrimination or unfair firing. These strategies should include programs designed to
educate employers/service recipients about racism, human rights codes and employment
equity. In addition, strategies to ensure job security for workers could take the form of
mechanisms for conflict resolution and to enforce the terms of agreement that arise from
that process.
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•
Women with disabilities and their staff must have choices about how to resolve
conflicts, and they must have access to a range of communication supports that expedite
conflict resolution. These communication supports, which should be made available to
women in managed care or individualized funding situations, could include guidelines
for procedures, mediation services, communication workshops and conflict resolution
strategies and services. In individualized funding situations, the administrators of
programs (usually independent living resource centres) could manage these procedures.
Alternatively, third-party community conflict resolution organizations could be
contracted to facilitate these procedures.
•
Service arrangements should be designed in ways that allow consumers the greatest
degree of flexibility possible in their support provision.
•
Strategies to promote better communication between service recipients and service
providers should be developed. Training in ways to be “good” employers or service
managers should be provided to consumers.
•
The portability of services must be increased. Those who use services tied to their living
arrangements should have options to engage staff to accompany them to community
places or to access outreach services when they need them.
•
To address the difficulties that can arise with respect to travel, a national attendant
registry should be established. The existence of such a registry would enable travellers
with a disability to arrange support services in advance. In addition, a national registry
would relieve home attendants of the stresses that can ensue when they travel with their
employers.
•
Women with disabilities should be entitled to use their own discretion with regard to
whether or not they hire a family member to provide support. To protect consumers and
their family members, ministry guidelines should be developed which clearly outline the
potential difficulties and harms that can arise when individuals with a disability hire
family members to support them. In addition, mechanisms should be in place to ensure
that both parties make an informed decision, and do not feel pressure to give, or to
receive, services under these circumstances. Furthermore, mechanisms should be in place
to address conflicts that might arise when a relationship of this sort has been entered.
Organization of Labour
•
Governments must revisit the pay scales of support workers. Moreover, governments must
reconsider the pay freezes that have been in effect for workers in this sector. Funds should
be distributed that would raise the hourly rate workers receive, and that would account for
the unique circumstances in which they engage in their work. Shift premiums and shift
differentials that account for night shifts, on-call work and one-hour shifts should be
introduced. Furthermore, these incentives must be incorporated into assessments of level
of need so agencies or employers with disabilities can adequately compensate those
workers who fill these time slots.
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•
Policy should distribute the funds necessary to build benefits and workers’ compensation
into managed care and individualized funding programs. (This might already be the case
in some provinces in regards to publicly funded agencies.) Benefits and workers’
compensation should not come at the expense of the consumer, in hours of service or
cost. Furthermore, regulations should be designed to protect against restricting the selfdetermination of women with disabilities.
•
Funding should be allocated to train support workers in occupational health and safety. In
addition, funding should be allocated to provide workers with professional development,
such as awareness training of disability issues and instruction in conflict
resolution/prevention.
•
Attention needs to be paid to the polarization conditions that ensure the equality of
women with disabilities but that may compromise the equality of paid support providers.
A fuller examination of the continuum of options that ensure consumer choice and
control but protect the security of workers needs to be made. For example, the issue of
unionization should be more fully explored. Possibly, new creative strategies for
collective bargaining could be devised that are appropriate to support relationships and
the equality of all the parties involved.
10. CONCLUSION
This study examined equality issues in the relationships of women with disabilities and the
women who provide supports to them. Equality of well-being in relationships of support was
the guiding framework for analysis. This concept includes not only an equivalent distribution
of resources, it accounts for the issues of marginalization and oppression faced by individuals
and groups and for the fact that people are situated differently. In this view, equality requires
that, when appropriate, different people be treated differently and be provided the support
they need to achieve well-being. Furthermore, as people are fundamentally connected and
mutually dependent, equality is viewed in the context of relationships between people. The six
criteria for equality of well-being formulated for this study suggest that relationships:
•
promote self-determination;
•
foster mutual recognition;
•
encourage respectful interdependence;
•
ensure security;
•
enable citizenship; and
•
democratize decision-making processes.
The study was premised on a recognition that relationships between women with
disabilities and their paid and unpaid support providers happen within a social and policy
context. Barriers to equality for women in relationships of support are a result of policy
determinants, such as disability-related support arrangements and funding, that are external
to the relationships themselves. However, these institutionalized inequalities may emerge
within those relationships and be enacted by those involved. Policies, which affect the
equality of one group, affect the equality of the other.
Recent policy shifts at the federal, provincial and local levels are determining the social
and economic position of women who receive disability-related supports, and the women
who provide these. While demand for disability-related supports has grown, funding has
declined. The Canada Health and Social Transfer (CHST) reduced transfers from the
federal government to the provinces while giving provinces control over social service
programming. In response, provinces have scaled back the health and social services they
fund, devolved responsibility for disability-related supports to community boards and local
governments and restructured programs.
Women with disabilities may use a number of different types of disability-related and other
supports, including income support, personal and home support, professional services, such
as rehabilitation and other therapies, and assistive devices programs.
The focus in this report was on home care and personal supports as they are delivered in
Manitoba, Ontario and Newfoundland. Three basic models were used in all the provinces,
though these models may differ slightly from place to place. The first was supportive housing.
111
Under these arrangements, the building in which clients with disabilities reside contains a
supported housing office that delivers rotation or scheduled supports to the tenants. The
second service delivery model was managed outreach in which people live in private homes
or apartments in a variety of locations, and an agency sends workers to deliver services to
them on a scheduled basis. The third model was individualized funding, where monies are
given directly to the recipients of services to hire, supervise and manage their own employees.
There does not appear to be a clear and consistent framework for the treatment of persons
who work as attendants or home-care workers. Like all workers, they are covered by
labour codes and human rights acts of their provinces. However, other related protections
seem to depend, in part, on the type of support arrangement under which they work.
Domestic labour laws may be applied to home support workers, particularly those working
under individualized funding arrangements. The Ontario Regulated Health Professions Act
recognizes the work in which attendants engage by allowing them to perform certain tasks,
even though it does not cover them. Some workers may also be covered under provincial
occupational health and safety acts. However, it is unclear which, if any, types of support
workers are included under these acts.
To determine equalities and inequalities in relationships between women, qualitative data
were analyzed to explore in what ways the six criteria for equality were enabled or restricted
in these relationships. It was found that the equality of consumers and providers of support
was tightly linked, with certain conditions fostering equality for both; other conditions
fostered equality for one at the expense of the other. It was also found that while structural
factors outside the relationships set the conditions for equality, whether or not the criteria for
equality were present, was played out within the relationships of support themselves.
Relationships are where equalities and inequalities are lived.
This research showed that the equality of consumers and providers of support alike are
affected by the access women with disabilities have to needed supports and services, the
arrangements under which these are delivered, and the organization of labour of the persons
providing the supports.
The research suggests a number of areas where policy reform is needed:
•
the structure of entitlements;
•
assessment procedures;
•
eligibility criteria;
•
co-ordination issues; and
•
the framework of principles for disability-related supports.
These issues may be addressed through the development of new protocols and guidelines
in these areas, but the main issue that needs to be addressed is funding. Not only is funding
needed for such revisions; funding increases are required to provide more benefits for more
persons. However, governments are in the process of cutbacks, not increases.
112
In terms of types of service and support arrangements, it was clear that equality for women
with disabilities was promoted when they could choose between a variety of options that
contained certain elements. These elements included choice in which individual’s provide
support, flexibility of services and portability. These were most often found in individualized
funding arrangements, which need to be more widely available, but should also be
incorporated into other options in the short term to the degree that it is possible, given that
funding reform is a long-term effort.
Some of the very qualities of service delivery that women with disabilities say are criteria
of their equality—control over who they hire, flexibility and portability—may increase
workers’ vulnerability and job stress. These issues are difficult to resolve, and creative
strategies in service arrangements are needed to ensure the equality of both parties in the
relationship. This is an area that deserves further exploration.
The organization of labour also affects the equality in relationships of support. Difficult
working conditions, low pay, limited access to job benefits, limited training and career
opportunities, and the low job status of paid support workers had a significant and direct
negative impact on their equality. Furthermore, these concerns indirectly have an impact on
the equality of consumers by restricting both the quality of services they receive and their
access to supports, and by leading to sometimes untenable demands on their unpaid support
providers, often family members, partners and friends.
The organization of labour leads to considerable tension in relationships between consumers
and providers of services. There appears to be a growing polarization of views on this issue.
In the way that the system is currently arranged, the more independent women with
disabilities are, and the more control they have over their own service provision, the less
secure are the working conditions of their staff. In other words, the equality and well-being of
one group is positioned in opposition to the equality and well-being of the other group.
Community-based services need to be delivered in ways that promote the equality of both
groups. These concerns gave rise to discussions of unionization, another highly sensitive
issue. Women with disabilities felt that unionization would restrict their equality significantly,
and were strongly opposed to it. Workers were somewhat ambivalent on the issue. They
pointed to the increased security and agency of unionized workers, but also felt that unions, in
their current form, were an inappropriate measure to address their issues. Both groups agreed
that the labour concerns of workers needed to be addressed in some way.
While the full impact of changes resulting from the CHST and restructuring at provincial
levels are as yet unclear, what is clear is that their impacts are being played out in women’s
homes and communities within relationships of support. The need to recognize and address
the mutual impacts of disability-related policy on women engaging in these relationships is
urgent. The health, well-being and equality of a growing population, and of the labour force,
are at stake.
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ENDNOTES
1
Special thanks to Mary Ennis at the Coalition of People with Disabilities (COD)
Newfoundland, and Dot Spencer at the Independent Living Resource Centre (ILRC)
Newfoundland.
2
According to the HALS Children in Household Survey for 1991, there were 534,430
children living with family members that year. Published information on patterns of
caregiving in these households is not available, however. See CICH 1994.
3
HALS does not distinguish on the basis of gender between sibling, extended family and
parental caregivers. This results in underestimating the extent of female involvement in
informal care within the family, probably by a considerable margin.
4
The types of occupations held by men and women are still as gendered as they were in
the 1950s. The 10 most common jobs for men in 1996 were truck driver, retail salesperson,
janitor, retail trade manager, farmer, sales representative (wholesale trade), motor vehicle
mechanic, material handler, carpenter and construction-trade helper. These account for 20
percent of all jobs held by men. The 10 most common jobs for women in 1996 were retail
salesperson, secretary, cashier, registered nurse, accounting clerk, elementary teacher, food
server, general office clerk, babysitter and receptionist. These account for 32 percent of all
occupations held by women in that year (Statistics Canada 1998).
5
More recent statistics on the situation of persons with disabilities are not available, since
Statistics Canada stopped conducting the Health and Activity Limitation Survey (HALS)
after the 1991 Census year.
6
The Health and Activity Limitation Survey of 1991 for Adults in Households (HALS)
indicates, for example, that women are 50 percent more likely to provide care for men
than for women who are aged 55 or over and disabled.
7
According to the HALS Children in Household Survey for 1991, there were 534,430
children living with family members that year. Published information on patterns of care
giving in these households is not available, however. See CICH (1994: 149-167).
8
This number and related statistics do not include approximately 70,000 women who, for
a variety of reasons were not assigned status on the census family variable.
9
A variable was derived on the basis of the questions on social support to identify
whether daughters or wives/female common-law partners provided help in any day-today activities.
10
A variable was derived on the basis of the questions used in Section C of the
questionnaire to identify whether persons surveyed received help from a community
agency in any day-to-day activity.
124
11
A variable was derived to identify whether respondents needed any help in any day-today activity because of their disability, whether they were receiving an adequate level of
help across all day-to-day activities and whether they needed more help than was
available to them in any day-to-day activity.
12
A variable was derived to identify the need for aids/devices across all the pertinent
screening questions in Section A of the questionnaire and in Section B question clusters
1 - 9. Respondents were classified according to whether they needed any device,
whether their need for devices was adequately met for all kinds of devices required and
whether there was any need for devices that had not been met.
13
The women with disabilities who participated in the focus group were not asked
questions regarding their employment status.
14
For consistency throughout the report, we have used the term “individualized funding”
as the model including direct funding and self-managed care programs, unless referring
to a specific program.
15
Professional service use was discussed in the focus group of women with disabilities;
some women did mention that they use such services.
16
Quebec was not involved in the development or signing of the document, though it
shares the concerns raised in the report.
17
It is unclear whether beneficiaries in this group will be able to go off ODSP
temporarily to pursue employment opportunities without having to repeat this process.
18
The documentation did not specify what these differences are.
19
An early approach viewed equality as similar treatment for people similarly situated.
This view allowed for the categorical assignation of rights (rights for men but not
women, White people but not Black people, etc.). Equality was later viewed as equality
of opportunity, whereby all people, undifferentiated by race, gender or other
characteristics should enjoy equal opportunity to be achieved through the removal of
legal and institutional barriers to access of these opportunities. However, this model
failed to recognize that people experience different circumstances, and not everyone is in
a position to benefit from the opportunities.
20
Racism is also an issue in relationships where service recipients are visible minorities
and their workers are White; however, since the interviews and focus groups comprised
primarily White women with disabilities, complaints of race discrimination toward
women with disabilities did not emerge.
21
While we contend that burnout may contribute to the likelihood of abuse, this is not to
suggest that this, or anything else, excuses abuse in any situation. Abuse is always
unacceptable, and burnout should not remove a worker’s accountability in such matters.
125
22
Policies, which govern benefits and workers’ compensation, vary according to the
province/territory and agency that administers and distributes them. A reviewer of an
earlier draft of this report pointed out that the Ministry of Community and Social Services
in Ontario, for example, builds dollars into the sums which consumers who access
individualized funding receive in order that their staff have coverage under workers’
compensation. The reviewer commented, however, that this coverage required a lot of
paperwork for the consumer, who received fewer service hours as a result; furthermore,
she explained that the coverage was an option, not a requirement.
126
Projects Funded Through Status of Women Canada’s Policy Research Fund
Call for Proposals:
The Relationship Between the Changing Role of the State,
Women’s Paid and Unpaid Work, and Women’s Vulnerability to Poverty *
Policy Options to Improve Standards for Women Garment Workers in Canada and
Internationally
Lynda Yanz, Bob Jeffcott, Deena Ladd, Joan Atlin
Maquila Solidarity Network (Canada)
Disability-Related Support Arrangements, Policy Options and Implications for Women’s
Equality
The Roeher Institute
Marcia Rioux, Michael Bach, Melanie Panitch, Miriam Ticoll, Patricia Israel
Gender on the Line: Technology, Restructuring and the Reorganization of Work in the
Call Centre Industry
Ruth M. Buchanan and Sarah Koch-Schulte
Policies, Work and Employability Among Aboriginal Women
Le Partenariat Mikimon, Association des Femmes Autochtones du Québec / INRSCulture et Société
Carole Lévesque, Nadine Trudeau, Joséphine Bacon, Christiane Montpetit Marie-Anne
Cheezo, Manon Lamontagne, Christine Sioui Wawanoloath
Social and Community Indicators for Evaluating Women’s Work in Communities
Relais-femmes
Louise Toupin and Nadine Goudreault
Women and Homework: The Canadian Legislative Framework
Stephanie Bernstein, Katherine Lippel, Lucie Lamarche, Diane Demers
Unpaid Work and Macroeconomics: New Discussions, New Tools for Action
Isabella Bakker
* Some of these papers are still in progress and not all titles are finalized.
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