Advancing the Inclusion of Persons with Disabilities: A Critical Analysis and Recommendations

A Report Prepared for the Council of Canadians with Disabilities
by Harry Beatty
Approved by CCD National Council June 15, 2003

• "Introduction"
• "A Profile of Disability in Canada"
• "Measuring Progress on Inclusion"
• "Disability Supports"
• "Skills Development, Learning and Employment"
• "Income"
• "Injury Prevention and Health Promotion"
• "Capacity of the Disability Community"
• "Conclusion"

[For summary of recommendations, click here.]

In December, 2002, the Government of Canada released a report entitled Advancing the Inclusion of Persons with Disabilities (Advancing the Inclusion). I have been asked by the Council of Canadians with Disabilities (CCD) to prepare an analysis of this report that will highlight key issues for the community of persons with disabilities, identify strengths and weaknesses of the report, and make recommendations directed at improving the effectiveness of future reports.

For the most part, the analysis in this paper follows the format and headings of Advancing the Inclusion. However, in Section I of this paper, and in a few footnotes subsequently, it will be convenient to combine some of the discussion of the Introduction of Advancing the Inclusion with the discussion of some of the content of the Conclusion. (The Conclusion contains a discussion of some important points, especially relating to methodology, that probably should have been emphasized earlier in the report.)

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I. "Introduction": The Objectives of the Report

[pages 2-3 of Advancing the Inclusion]

The stated objectives of the report, and the approach chosen to realize those objectives, are stated in the Introduction to Advancing the Inclusion as follows:

"This first comprehensive report on disability in Canada describes where our country has made progress, how the Government of Canada has contributed, and where work remains to be done.

Part 1 of the report takes a broad look at disability issues in Canada. It presents a profile of disability in this country, describes Canada's knowledge base on disabilities and reviews how we measure progress towards inclusion. Part 2 of the report deals with the five areas in which we can measure progress toward inclusion; it describes Canada's progress to date as well as the Government's contribution to that progress. The report ends with a brief conclusion that summarizes key Government of Canada disability initiatives and notes some issues to be covered in future reports." (p. 2)

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It is worth emphasizing that the report aims at being comprehensive - in fact, it is described as "the first comprehensive report on disability in Canada" (p. 2). There have been other extensive reports produced by the Government of Canada, dating back to Obstacles¹ in 1981, so it is clear that Advancing the Inclusion aims at a high standard of completeness in covering disability issues.

Another positive note in this overview is the acknowledgment that more remains to be done, and the reference to future reports. An important next step, however, would be a commitment to a more specific timetable for future action, and to a schedule for releasing future reports. In the Conclusion to Advancing the Inclusion, it states (on page 69)

. . . . the Government of Canada anticipates producing its next report on disability in 2004. The timing of future reports is still undetermined.

The issues facing Canadians with disabilities and their families are critical, and a stronger commitment than this to studying and reporting on indicators of progress is essential. A commitment to an annual report, to be co-coordinated with government budgetary and other planning processes, would be a more appropriate beginning.

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Recommendation #1
The Government of Canada should make a commitment to producing an annual report on disability issues in Canada. The report should include information on initiatives taken during the year, and a plan for initiatives to be taken during the next year.

A fundamental problem with Advancing the Inclusion becomes apparent during the Introduction, and recurs throughout the report. While the Introduction refers to "many partners working together", it also acknowledges that "provinces and territories deliver most of the programs and services that support Canadians with disabilities". But provincial and territorial governments have not joined with the federal government to produce Advancing the Inclusion. It is simply a publication of the Government of Canada. If the different levels of government are truly interested in working together on behalf of persons with disabilities, cooperation with respect to future reports would be a valuable first step.

Recommendation #2
Future reports on disability in Canada should be developed and produced with the active involvement of provincial and territorial governments.

As we proceed with our analysis of Advancing the Inclusion, we will make further recommendations regarding the content of future annual reports. In general, the recommendations will be worded as addressed to the Government of Canada, but they should be understood as applying to provincial and territorial governments as well, in light of Recommendation #2.

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Before turning to the detailed information in Advancing the Inclusion, it will be helpful to consider the stated objectives of the report in a little more detail. Our starting point will be to discuss briefly two ideas referred to in this overview of the report: (a) "inclusion"; and (b) "the Government's contribution".

(a) Inclusion

The word "inclusion" is, of course, highlighted in the title of the report, and emphasized throughout. Inclusion as a guiding value for community life and disability policy has achieved an international recognition over the past two decades or so. Many people around the world have contributed to our understanding of inclusion. Two Canadians who played a key role were the team of Marsha Forest and Jack Pearpoint, founders of Inclusion Press, the Inclusion Network, and what is now called the Marsha Forest Centre in her memory. On the web site of these resources² we find the following answer to the question "What is Inclusion?"

Inclusion is about ALL of us.

Inclusion is about living full lives - about learning to live together.
Inclusion makes the world our classroom for a full life. Inclusion treasures diversity and builds community.
Inclusion is about our "abilities" - our gifts and how to share them.
Inclusion is NOT just a disability issue."

Both In Unison³ documents (1998 and 2000) link inclusion to citizenship. In Unison 2000, as quoted in the Introduction to Advancing the Inclusion, states that "citizenship is the inclusion of persons with disabilities in all aspects of Canadian society - the ability of a person to be actively involved with their community". (p. 2) The concept of inclusion as citizenship fits well with the more personalized and individualized idea developed by Forest and Pearpoint. They both emphasize that Inclusion means the valuing of persons with disabilities by their communities and by their society.

The social and economic indicators emphasized in Advancing the Inclusion present aspects of Canada's progress, or lack of progress, towards inclusion. But they do not cover many other important aspects. Educational opportunities, jobs, and income are essential components of inclusion, but so are equal treatment in the justice system⁴ , access to leadership opportunities in political and community organizations, and respectful portrayal in the mass media, to take just three examples.⁵

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Recommendation #3
Future reports on disability in Canada should contain a discussion of additional aspects of the inclusion of persons with disabilities in our society, especially opportunities for involvement in community and political life, and recognition of rights in the justice system and by governments.

(b) The Government's Contribution

Throughout Advancing the Inclusion there are sections entitled "Government Action", in which the "Government's Contribution" to addressing the challenges facing Canadians with disabilities are described. This is a first step towards creating a report that will relate data and information to actions and initiatives that are required to address the obstacles and gaps in services identified, but much more needs to be done in future reports to develop effective action plans. For the most part, the information in the "Government Action" sections in Advancing the Inclusion is limited to a general description of the intent of programs and their overall cost. The focus in future reports should be on ways in which the programs could be improved, and on specific plans of the Government to make the required changes in the short-, medium- and longer-term. The information provided in future reports about persons with disabilities in Canada should be chosen and developed to facilitate assessment of the actions which are proposed.

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Recommendation #4
Future reports on disability in Canada should contain a description of "Government Action" that includes action plans relating to the short-term (the next year), the medium-term (the next two to three years), and the longer-term (the next three to five years). These action plans should be as specific as possible. The data and information in future reports should be selected to facilitate discussion and assessment of these action plans.

The "Government's Contribution" described in Advancing the Inclusion is clearly just the programs and initiatives of the federal Government. Throughout the report, there is limited reference to the activities of the provincial and territorial governments. Even though there is a clear recognition in the Introduction that "provinces and territories deliver most of the programs and services that support Canadians with disabilities", little information is provided about these programs and services.

Since Advancing the Inclusion does not contain detailed information about provincial and territorial programs and services (let alone municipal initiatives which are also important), it cannot really be described as a comprehensive report. If the Social Union process is to succeed on behalf of persons with disabilities, it is essential that the federal, provincial and territorial governments work together.⁶ Collaboration on producing an informative report as a basis for action would be a crucial first step.

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Recommendation #5
Future reports on disability in Canada should contain information on provincial and territorial programs and services, including initiatives taken during the year, and a plan for initiatives to be taken during the next year.

We will have more to say later about federal/provincial/territorial co-operation, and obstacles to co-operation, as we proceed through our critical analysis of Advancing the Inclusion. A great deal has been written in recent years about changes to our federal system and the implications for social policy, including disability policy. But for the community that CCD represents it really comes down to a simple and straightforward concern. Tangible evidence must be shown that the various levels of government are in fact, and not just in theory, working together on behalf of persons with disabilities

II. "A Profile of Disability in Canada" and "Improving our Knowledge Base on Disability: PALS and its Limitations "

[pages 4-8 and pages 9-12]

The profile of disability in Canada set out in Advancing the Inclusion is based primarily on the Participation and Activity Limitation Survey 2001 (PALS) developed by Statistics Canada, its predecessor the Health and Activity Limitation Survey 1986 and 1991 (HALS), and other Statistics Canada surveys. While there is no doubt that these surveys are important and provide valuable information, they have their limitations, and are not necessarily the only reliable sources of information about Canada's community of persons with disabilities. We shall look first at the limitations of PALS, HALS, and the other Statistics Canada surveys, and then consider other sources of information that are also available to be used in future reports.

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(a) Limitations of PALS and HALS

Some of the limitations of PALS and HALS are identified in Advancing the Inclusion itself, but others are not. A technical analysis of Statistics Canada surveys is beyond the scope of this analysis and beyond the capabilities of the author. Nevertheless, there are important issues which we can identify.

The discussion of PALS and HALS in Advancing the Inclusion begins with a clear recognition that they are based on the responses of individuals with disabilities. These responses are described as "subjective". (page 4) Of course, the same observation could be made about many other Statistics Canada surveys of different classes of Canadians. The "subjectivity" of PALS and HALS does not mean that the picture presented of Canadians with disabilities is not generally accurate and helpful. They are informative in the same way that surveys of other communities and populations within Canada are informative.

Advancing the Inclusion notes, no doubt correctly, that people vary in their abilities to report accurately on the extent and implications of their own disabilities. But other factors may affect the validity of the information collected through PALS, HALS, and other Statistics Canada surveys. The length and extent of the telephone interviews may be difficult for some persons with disabilities. Depending on their experience with disability issues, interviewers may have difficulty interpreting some answers they are given. The specific terminology or wording in some of the questions may be confusing to some respondents. People may have difficulty in recalling details of the supports they received, income, or employment during the previous year.

It is important that Statistics Canada continue to work with organizations representing persons with disabilities to improve the quality of the data in PALS. This consultation should begin in 2004 at the latest as part of the preparation for the 2006 Census and PALS post-censal survey.

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Recommendation #6
In 2003, Statistics Canada should develop a plan for consulting the community of persons with disabilities on PALS issues, with the consultation itself to begin in 2004.

There was no post-censal survey on disability in 1996. Organizations representing persons with disabilities made strong representations to the Government of Canada to reinstate the survey in 2001. While this was done, valuable ground was still lost. In May of 2003, both the Government and the community are still relying on 1991 HALS data as the best available information source on many important issues.

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Recommendation #7
The Government of Canada should make a strong commitment which ensures that the PALS survey will be carried out and improved in 2006, and in conjunction with the Census every five years in the future.

A major limitation of PALS 2001 is that the data cannot be compared with HALS 1991. (The reasons are set out briefly in Advancing the Inclusion on pages 9-10 and described more fully in a Statistics Canada report entitled A new approach to disability data: changes between the 1991 Health and Activity Limitation Survey (HALS) and the 2001 Participation and Activity Limitation Survey (PALS) by Behnaz Behnia.⁷ ) As a result, conclusions cannot be drawn from this data about the impact of governmental policies during the 1990's on Canadians with disabilities. In particular, there is no opportunity with the publication of PALS 2001 to test empirically a widely-held belief among disability organizations and advocates that ground was lost on key issues, as a direct result of the fiscal restraint and cutbacks to programs by all levels of government during the past decade.

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Even if the data had been comparable, the two surveys were ten years apart and comparisons would have provided limited assistance in measuring the impact of government policies, and of changes in social and economic conditions. This reinforces the point just made that PALS in future should be part of every Census.

The issue of comparability of data should be an important part of the consultation with the community described in Recommendation #4. There is clearly a "trade-off" between continuing attempts to improve the data on the one hand, and attempts to identify trends within the data on the other.

The PALS framework has an inherent limitation in identifying trends, in that the individuals surveyed each time are different. An alternative approach would be a longitudinal survey, which followed the same persons with disabilities over a number of years. Longitudinal surveys are often more effective tools for identifying trends, and the impact of social and economic policies and changes, within communities.

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Recommendation #8:
Statistics Canada, in consultation with organizations representing persons with disabilities, should carry out a feasibility study of a longitudinal survey of persons with disabilities in Canada.

PALS 2001 did not include persons living in institutions, nor did it include residents of the Territories. These are both groups of particular importance for policy purposes. Institutions, and alternatives to them, has been a critically important issue, and will become even more important as Canada's population ages. The Territories are home to many aboriginal persons, including aboriginal persons with disabilities. It is a major shortcoming that PALS 2001 was not designed to include both groups, which include among their number many of the most disadvantaged and neglected persons with disabilities in Canada.

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Recommendation #9:
In future, PALS surveys should include all Canadians with disabilities, including those living in institutions, and those resident in the Territories.

(b) Availability and Utilization of Other Data Sources

In the section of Advancing the Inclusion entitled "Improving our Knowledge Base on Disability" (pages 9-12), the focus is almost exclusively on Statistics Canada surveys as a source of information.

There are, however, other important and available sources of data on persons with disabilities and the issues facing them in Canada. These include:

• databases maintained by provincial, territorial, and municipal governments
• databases maintained by disability organizations
• databases maintained by health and disability insurers.

Information from these databases could be used to complement and serve as a check on information from PALS and other Statistics Canada surveys.

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Recommendation #10:
Future reports on disability in Canada should utilize information from databases maintained by federal, provincial and territorial governments, by disability organizations, and by health and disability insurers.

The full picture of disability in Canada cannot be given by statistical databases alone. Together with this quantitative research it is essential to have qualitative research, which deals with the perceptions of persons with disabilities, and others knowledgeable about their circumstances, as to the reasons for the data.⁸ Disability organizations, particularly organizations representative of persons with disabilities themselves and of family members of children with disabilities, have developed a considerable and valuable body of reports which can help to explain the disadvantagement of persons with disabilities, and suggest solutions.⁹

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Recommendation #11:
Future reports on disability in Canada should utilize information and reports from qualitative, person-centered research, especially information and reports developed by, or with the involvement of, organizations representative of persons with disabilities themselves and of family members of children with disabilities.

Advancing the Inclusion refers (on page 11) to the review of disability definitions being carried out by Human Resources Development Canada (HRDC), and notes that "this document should be available in 2003". There is a close relationship between disability definitions and eligibility criteria for programs, and it is essential that this document be made available to disability organizations for review this year. It is a critically important first step in working towards a common, current, fair and effective concept of disability which will be a cornerstone of progress in disability policy in Canada.

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Recommendation #12
Human Resources Development Canada should make the disability definition "synthesis document" available during 2003, and make a commitment to a full consultation with Canadians with disabilities and the organizations which represent them on the content of this document.

III. "Measuring Progress on Inclusion": What Do the Indicators Indicate?

[pages 13-16]

A strength of Advancing the Inclusion is the commitment made by the Government in this section of the report to developing an accountability framework based on outcomes and indicators. While some of the specifics presented will be subjected to a critical analysis, it is a strong beginning to recognize, as the report states (pages 13-14), that:

"Outcomes, or results, are the best measure of success for government policies and programs."

This describes an approach to policy evaluation, and hopefully to policy making as well, that will have as its primary focus the actual difference which policies and programs make to persons with disabilities. It is an essential first step to creating policies and programs that will truly address the circumstances affecting the lives of Canadians with disabilities.

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(a) Outcomes

In Advancing the Inclusion, five outcomes are identified as "key areas to measure" [page 13]:

• disability supports
• skills development, learning and employment
• income
• injury prevention and health promotion
• capacity of the disability community.

There are other outcomes that should be included in future reports to provide a comprehensive picture on disability in Canada. Here we provide three examples, but a number of others would be identified by the community of persons with disabilities.

Living arrangements are vitally important to the lives of persons with disabilities. It is essential that people live in housing arrangements that are dignified and which meet their needs. Too often, people with disabilities are forced to live in substandard boarding or rooming houses, or in unregulated group housing or care facilities.

Family relationships are another important area of concern. Adults with disabilities are still often living with their parents, because they do not have alternatives. This may be inappropriate and unfair to both the adult with a disability and his or her parents, particularly when the parents are still carrying out the role of unpaid caregivers after 40 or 50 years. Another important aspect of family relationships is that persons with disabilities face barriers in entering into spousal or partnership arrangements, and in parenting.

Social and recreational activities provide a third example of important outcomes not included in Advancing the Inclusion. Key issues include the accessibility to persons with disabilities of mainstream social and recreational opportunities, and whether leadership opportunities are given to persons with disabilities in social, recreational and cultural organizations.¹⁰

As discussed earlier in this paper¹¹, inclusion is a broad concept, covering all aspects of social, economic, political and cultural life that impact on how persons with disabilities are valued.

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Recommendation #13:
Future reports on disability in Canada should include additional outcomes, such as living arrangements, family relationships, and social and recreational opportunities, identified in consultation with organizations representing persons with disabilities.

(b) Indicators

For each of the five outcome areas covered in Advancing the Inclusion, a set of indicators is identified (page 14). The indicators are available data which can be used to measure progress with respect to the outcomes. For example, data on aids or devices for everyday activities are an indicator for disability supports. Data on working-age adults with post-secondary diplomas or degrees are an indicator for skills development, learning and employment. Data on major source of personal income are an indicator for income as an outcome.

Setting out explicitly the full list of indicators used in the report is a good beginning. It assists readers to focus on the key question of what information is available to measure progress in each area. It is also helpful that Advancing the Inclusion recognizes clearly that timely data is not available for most of the outcomes, and so the reporting framework is only a starting point. Additional or different indicators, as the report states, may be used in future reports. (page 14)

A good framework to consider as a basis for further discussion of indicators is set out by Frederick Collignon in his article "Is the ADA successful? Indicators for tracking gains".¹² The Americans with Disabilities Act (ADA) has been a subject of ongoing public debate in the United States, and Collignon develops a framework for the discussion of the choice of indicators.

There are, as Collignon recognizes, a wide range of possible indicators that could be used for the evaluation of disability policy. A single indicator by itself, however carefully defined and measured, does not by itself indicate that government policy is, or is not, successful.¹³ Take as an example employment rate, which is an indicator used in Advancing the Inclusion for the outcome area of skills development, learning and employment. The employment rate of persons with disabilities, as compared to the employment rate for persons who are not disabled, certainly gives some indication of the disadvantagement faced by people with disabilities in the workforce. But it does not tell the whole story. It measures whether people have jobs or not, but not whether they are underemployed, or have limited opportunities for advancement. It does not tell us whether employees with disabilities are accommodated in the workplace. It does not tell us whether they have equitable access to employee benefits.

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Further, changes to the employment rate for both persons with disabilities and the general workforce population can only be traced partially to government policies. If the employment rate goes up, governments like to emphasize the number of jobs created. The implication is that somehow the government has created the jobs. They are not so keen to link drops in employment to government policies. Making this connection is left to opposition parties. When jobs are lost, governments are quick to attribute this to impersonal economic forces and political and economic developments beyond their control. In fact, employment rates, both for persons with disabilities and the population in general, are the product of a wide range of factors. Some are largely within government control (e.g. employment laws), some are partially within government control (e.g. the acquisition of skills through training), and some are largely beyond government control (e.g. changes in international market conditions).

We shall return to the discussion of specific indicators in later sections of this paper, as we discuss the five outcome areas covered by Advancing the Inclusion. For now, our point is simply to illustrate the limitations inherent in the information provided by a single indicator.

Collignon recognizes that the use of a combination of indicators presents a fuller and more informative picture. At the same time, there is increased administrative cost involved in the collection of more data. For Collignon, the best strategy is to keep the number of indicators of an outcome to a minimum, while choosing the indicators carefully to ensure the necessary information is available.

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Collignon starts by setting out general criteria for selecting or developing indicators of programs or policies. These criteria are not specific to disability issues. His list is as follows (some of his explanations have been modified slightly for clarity):

1. Validity. Does the indicator truly measure the outcome that we want to monitor?
2. Reliability. Will everyone dealing with the subject area report what they see the same way and code the indicator the same way?
3. Stability. Will observers code and report the same factual circumstances comparably from one observation to the next?
4. Responsiveness. Does the indicator show change when it has occurred, and not show change when none has occurred?
5. Consistency. Does a unit of change in the indicator mean the same thing all along the scale of the indicator, if the indicator is set out as an interval scale? (An interval scale is one based on meaningful units of measurement: its use implies that quantitative comparisons can be made of what is being observed.)
6. Availability. Is the indicator routinely available for collection and monitoring, and can it be measured at an affordable cost?
7. Feasibility. If the indicator is not readily available, is its measurement readily within the capability and the budget of the organization seeking to monitor it?
8. Understandability. Is it clear to users what the indicator means and why it is a useful indicator?

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Besides these general criteria for public policy indicators, Collignon gives criteria specific to the ADA as a major disability initiative. With some adaptation, these can be used in our analysis of Advancing the Inclusion as well:

1. Adaptability. Is the indicator valid and viable regardless of the kind or severity of disability that the person may have? If not, it may be necessary to use different indicators for people of different disability types.
2. Clarity. Will the general public, and members of the community of persons with disabilities, be able to understand the indicator?
3. Value relevance. Does the indicator reflect the current philosophy and values of those with disabilities, their families, and advocates?
4. Policy relevance. Does the indicator reflect the concerns policy makers consider to be important?

Collignon's list of criteria attempt to answer the question: Why should we choose certain indicators of disability policy outcomes, and not others? This is a central question which the Government of Canada and representatives of the community of persons with disabilities need to address together, in order to understand "measuring progress on inclusion" more fully. Collignon's formulation of criteria can no doubt be improved upon, but it serves as a useful starting point for further discussion. We shall see illustrations of some of his criteria in later sections of this paper, dealing with the specific outcome areas.

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Recommendation #14:
The Government of Canada should work together with representatives of disability organizations to develop a framework for choosing the most effective indicators of disability policy outcomes, as a basis for future reports on disability in Canada.

Many Canadians with disabilities are also members of other historically disadvantaged groups - women, Aboriginal persons, multicultural and ethnic minorities, gays and lesbians, children, seniors, and the other groups identified in Charter jurisprudence and human rights legislation. As members of more than one disadvantaged community, they are subject to "double disadvantagement" due to the cumulative effect of the challenges facing all of the communities they belong to. There may also be inequitable criteria and outcomes within disability programs and initiatives which contribute to systemic discrimination. In Advancing the Inclusion, data is presented relating to gender issues and Aboriginal issues, but there is very little information on other forms of double disadvantagement. Even for gender and Aboriginal issues, there is a need to move beyond the description of additional disadvantagement, to an analysis of why it is occurring and how it can be addressed.

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Recommendation #15:
Future reports on disability in Canada should contain information on the "double disadvantagement" of persons with disabilities who also belong to other equality-seeking groups, together with an analysis of why this is occurring, and what specific actions are required to address the additional disadvantagement.

IV. "Disability Supports": Is Accessibility a 'Support'?

[pp. 17-30]

The first outcome area covered in detail in Advancing the Inclusion is disability supports. For this area, six "indicators of progress" are identified (page 17):

• help needed for everyday activities
• aids or devices needed for everyday activities
• home modifications
• local and long-distance transportation
• information in multiple formats
• health care requirements

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The items on this list are not really specific indicators in themselves. They each describe groups of indicators relating to a sub-area of disability supports. However, under each of these items as headings, Advancing the Inclusion discusses a number of specific indicators. Then, under each of the six headings, there is also a discussion of government actions with respect to that particular sub-area of disability supports.

Much of the data in this section of Advancing the Inclusion comes from HALS 1991. After Advancing the Inclusion was published, Statistics Canada released Disability Supports in Canada, 2001¹⁴ based on PALS 2001. Accordingly, we will not discuss the HALS data provided in the report on disability supports in detail. (As previously discussed in connection with Recommendation #7, Statistics Canada has stressed that PALS and HALS data cannot be compared. Thus we cannot compare directly the situation regarding disability supports in Canada in 2001 with that in 1991.) We will, however, look at two aspects of the presentation of information in this section: (a) the relationship between information on accessibility issues and disability support issues; and (b) the information provided on tax measures related to disability.

(a) Accessibility Issues and Support Issues

Some of the issues covered under "Disability Supports" are primarily issues of individual supports, such as personal help with everyday living, and technical devices and aids. But other topics are primarily issues of the accessibility (or inaccessibility) of our society, such as the accessibility of buildings, public spaces and transportation systems, and the provision of information in multiple formats.

There are important overlaps between accessibility issues and individual support issues. The inaccessibility of building and services may give rise to a need for individualized supports. For example, where the main local transit system is inaccessible to persons with disabilities, alternative individualized ride services are required to fill at least part of the need. Where persons with disabilities cannot access an elevator or lift on their own, they require personal assistance to do so.

In many cases, where the two are intended to meet the same need, accessibility solutions are more appropriate and effective than the provision of disability supports. Accessibility solutions tend to be systemic and long-lasting, while the provision of disability supports as a response to similar needs tends to be ad hoc and time-limited.¹⁵

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However, the focus in the "Disability Supports" section of Advancing the Inclusion tends to be on data available through PALS and HALS, and thus oriented towards individual issues and solutions. This is especially clear in the section on transportation (pages 23-24). We are told, for example, that 1991 HALS data show that 20% of persons with disabilities had problems with long-distance travel. But what we are not given are data about the accessibility of airlines, trains, buses, and ferries, and of the terminals for each type of service. Nor are we given data about accessibility policies of carriers, such as policies around "one-person, one-fare". In general, we are not given data relating to carriers at all, but this would be most relevant to understanding accessibility issues in transportation facing persons with disabilities, and solutions to those problems.

Except for the section on "information in multiple formats" (pages 25-26), the emphasis in the discussion of disability supports in Advancing the Inclusion is on data from PALS, HALS and other Statistics Canada surveys, not on the accessibility of buildings, information, and services. While information relating to individuals is important, systemic information must be given as well, to provide a full understanding of the issues and effective solutions.

Recommendation #16
Future reports on disability in Canada should contain information showing the accessibility of buildings, information sources, services, and communities to persons with disabilities. Where this information is not available, research should be carried out into ways of developing the relevant data.

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(b) Tax Measures to Address Needs for Disability Supports

The use of tax measures by the federal government, and provincial and territorial governments as well, to address disability support issues is emphasized in Advancing the Inclusion. (pages 19-21) These tax measures, especially the Disability Tax Credit, have given rise to significant public debate in recent years. The Government of Canada has regularly made enhancements to disability-related tax claims within the income tax system, and in this year's Federal Budget has added the Child Disability Benefit to the Canada Child Tax Benefit system.¹⁶ But concerns have been expressed that using the income tax system as a vehicle for addressing needs for disability supports excludes many individuals and families who are most in need, because of factors like the non-refundability of personal tax credits and the difficulties inherent in documenting eligibility for the Disability Tax Credit.

A full discussion of these challenging issues is beyond the scope of this paper. They will be addressed in depth by the Technical Advisory Committee on Tax Measures for Persons with Disabilities, recently appointed by the Ministers of Finance and of National Revenue.¹⁷ Here we will consider only the presentation of information relating to tax measures in Advancing the Inclusion.

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It is stated in the report (page 19) that:

Recent budgets have enriched the existing federal tax measures and introduced new ones to help people with disabilities. With these enhancements, federal tax assistance to persons with disabilities and those who care for them increased from $600 million per year in 1996 to about $1.1 billion per year in 2002.

But no context is provided to assist in understanding these figures. A starting point is the PALS estimate that there are about 3.6 million persons with disabilities in Canada. Using this figure, the tax assistance in 2002 of $1.1 billion per year works out to a bit less than $300 per person. Put in this perspective, the tax measures which support persons with disabilities and their families constitute a relatively modest program. Even if we assume that the tax initiatives are intended to assist only a percentage of Canadians with disabilities, they are modest in scope. If only half of Canadians with disabilities are assumed to be intended to benefit, for example, the average annual expenditure is less than $600 per year in 2002.¹⁸

Another limitation in how information about the tax measures is presented is that no information is given about who benefits from them. That is, there is no information given in Advancing the Inclusion about the distribution of disability-related tax claims according to income. It would be helpful to know the number of persons who make these claims, whether the claims are made by persons with disabilities themselves or by family members, and whether the average amounts claimable by those with higher incomes are significantly greater than the average amounts claimable by those with lower incomes.¹⁹

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Recommendation #17:
Future reports on disability in Canada should contain information on the average amounts of tax assistance provided to individuals and families, and on the distribution of this assistance by income class.

V. "Skills Development, Learning and Employment": More Information Required

[pages 31-43]

This section of Advancing the Inclusion contains a most important and to some extent hopeful statement near the beginning (page 31):

By the year 2020, Canada may have a shortage of nearly one million workers. The country must take measures now to make sure all working-age adults have the right skills and opportunities to participate fully in the economy and in society.

Skills development and learning are one among the government's highest priorities for Canadians, especially for persons with disabilities and Aboriginal people. Research shows that persons with disabilities still encounter a number of barriers to full participation in learning and work. Women with disabilities and Aboriginal persons with disabilities face even greater challenges than others.

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What is hopeful about this statement is that the projected worker shortage over the next two decades (and 2020 is not all that far away!) will finally give real impetus to efforts by governments, employers and educators to provide full and equal opportunities to persons with disabilities. As the demand for qualified workers increases rapidly, it will be more essential to Canada as a society to have a truly inclusive labour market, grounded on a truly inclusive education and training system. Inclusion in mainstream opportunities has been a legal and moral imperative for at least the past two decades. Over the next two decades it will become an economic imperative as well.

But this hope is significantly tempered by the clear recognition in Advancing the Inclusion that relatively little progress, if any, has been made on the crucial issues of skills development, learning and employment for persons with disabilities over the past decade. As the report recognizes (page 35):

. . . . the 1996 census found that persons with disabilities are only half as likely to be employed as those without disabilities. . . . And the situation has deteriorated since 1991.

Figure 11 (on page 35) shows clearly what happened to persons with disabilities in the labour market during the recession of the early 90's. While the employment rate for men without disabilities dropped by 1%, the rate for men with disabilities dropped by 6%. While the employment rate for women without disabilities increased by 2%, the rate for women with disabilities dropped by 3%. Clearly, in Canada persons with disabilities (along with members of other marginalized groups) still tend to be "last hired, first fired".

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The information presented in this section of Advancing the Inclusion clearly shows that there is a major problem for Canadians with disabilities with respect to skills development, learning and employment. But considerably more information is required in future reports to show what the solutions to this problem might be. This is a complex and multi-faceted area, so it is not surprising that many indicators are required. Some examples of further indicators that might be helpful are set out here, but this is really a key area to emphasize in the consultation on disability policy indicators proposed above in Recommendation #13.

(a) "Children aged 6-15 attending school" (pages 31-32)

It is noted in Advancing the Inclusion that future reports will provided detailed information on educational issues for children, such as inclusion in mainstream schools and the availability of needed educational supports. This is critically important as during the restraint period of the 90's and beyond, educational supports for children with special needs were significantly reduced in most parts of Canada.²⁰ This was a disastrous policy, as the children who were further disadvantaged by the cuts will be working age adults over the next two decades, but often ill-prepared to take their place in the workforce.

The promised data needs to be included in future reports, but should be expanded to include young persons aged 16-21, who are in the critical transitional period from secondary school to post-secondary education, training, or employment.

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Recommendation #18:
Future reports on disability in Canada should include information on the educational opportunities, supports and barriers affecting children and young persons aged 6-21.

(b) "Working-age adults with post-secondary diplomas or degrees" (pages 33-35)

In Advancing the Inclusion, the importance of post-secondary education and training is emphasized, and it is noted that "Canadian adults with disabilities are about two thirds as likely to have a post-secondary education as adults without disabilities". Again, however, the reasons for this are not made clear by the reported data.

Fortunately, the National Educational Association of Disabled Students (NEADS) has carried out an in-depth survey of supports for students with disabilities in post-secondary institutions.²¹ This would serve as an excellent foundation for the development of further information on this important topic.

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Recommendation #19:
The Government of Canada should consult with NEADS regarding information about access to post-secondary education by students with disabilities, and include this information in future reports on disability in Canada.

(c) "Employment rate", "Persons employed all year", and "Hourly Wage" (pages 35-41)

As we have discussed, the information provided on employment and persons with disabilities in Canada in Advancing the Inclusion paints a clear picture of the employment disadvantage still prevailing throughout this community. Further, and even more discouragingly, the data shows that little, if any, progress has been made so far. We have already referred to the ground lost by persons with disabilities in the labour market during the recession of the early 90's. When we come to full-year employment, the picture is similarly bleak. As the report states (page 38), "the percentage of working-age adults with disabilities who enjoy full-year employment is less than half the rate for adults without disabilities". And no sign of improvement is evident (see Figure 14 on page 38). Added to this is an even bigger gap in earnings for those who are working (see the discussion immediately above Figure 16 on page 39). Those persons with disabilities who succeed in working have annual earnings, on average, of only about 40% of those of workers without disabilities.²²

Clearly, even when employed, persons with disabilities are often underemployed, or only employed on a part-time, temporary or casual basis.

What is missing in Advancing the Inclusion is information relating to the specific barriers which persons with disabilities still face in the workplace. This omission should be rectified to a considerable extent in future reports, however, as data from PALS 2001 become available. As previously in HALS, especially HALS 1991, identification of employment barriers is a principal objective of the survey. ²³

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The description of "Government Action" by the federal Government in these sections fails to recognize and state clearly the limitations of some of the programs that are discussed. While the programs are described as "major" (page 36), most are quite limited in funding and scope. Keeping in mind the huge numbers of persons with disabilities who are disadvantaged in employment, and the enormous surplus in the Employment Insurance fund²⁴, the annual budget of the Opportunities Fund of $30 million (page 37) is not really a very significant national initiative. Nor is Employability Assistance for People with Disabilities: the total federal commitment of $193 million annually (page 37) has basically been frozen at the same level since 1998, when there was a modest increase over the federal contribution to the former Vocational Rehabilitation of Disabled Persons program, and there are no apparent current plans to increase this amount.²⁵ The Canada Pension Plan's Disability Vocational Rehabilitation Plan (page 39) is also small in scale²⁶, and is set within a system based on a "long-term unemployability" definition of disability²⁷. So participants in rehabilitation under this Plan do so at risk of losing their on-going entitlement, should they ultimately be unable to find suitable employment. It would enhance the credibility of future reports to have a more realistic portrayal of government initiatives in this important area.

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Recommendation #20:
Future reports on disability in Canada should contain information on the barriers facing persons with disabilities in obtaining suitable employment.

Recommendation #21:
Future reports on disability in Canada should contain fuller descriptions of government initiatives in employment, including the limitations of these programs and services.

(d) "Employers providing facilities, equipment or aids to accommodate people with disabilities" (pages 41-43)

The willingness of employers to recruit, hire, and accommodate persons with disabilities is evidently a most important factor, and it is good that Advancing the Inclusion recognizes its importance. Unfortunately, not much data is available, and what is available comes solely from a survey of employees with disabilities carried out as part of the national Workplace and Employee Survey. (See page 42 - further, footnote 48 on that page notes that "there are a number of limitations to interpretation of this survey".)

While this is a reasonable starting point, it is essential to survey employers, unions and employee associations as well to obtain a fuller picture of the accommodations available, or not available, in the workplace.

Further, not all significant barriers to the employment of persons with disabilities fall easily under the headings of "facilities, equipment, or aids". The attitudes of employers, co-workers and customers are still too often a negative factor. Another type of barrier is created by employee benefit plans which contain "pre-existing disability" clauses which either exclude persons with disabilities from coverage altogether, or limit the coverage available to them.

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Recommendation #22:
Future reports on disability in Canada should contain fuller information on barriers to employment, including information obtained from employers, unions, and employee associations. Barriers should be understood widely as including attitudinal barriers, and barriers created by employee benefit plans, to take two important examples.

VI. "Income": Not the Only Indicator of Financial Disadvantage

[pages 44-50]

The information presented in this section of Advancing the Inclusion confirms the well-established link between disability and poverty. But additional data, as we shall see, are required to give a full picture of the extent of poverty among Canadians with disabilities and their immediate families.

The principal measure of low income used in the report is the low-income cutoff (LICO) used by Statistics Canada. While the LICO is not officially described as a "poverty line", and while there has been considerable discussion of alternatives to it, it is still the best known and most widely used measure of low income in Canada.²⁸ As the report describes it (page 46):

The LICO is the threshold below which a family is likely to spend 20% more of its income on food, shelter and clothing than the average family.

The LICO data presented in Advancing the Inclusion confirm the poverty of persons with disabilities in Canada. For example, from 1993 to 1998 an average of 25% of adults with disabilities were living in households below the LICO, compared to an average of 10% of those without disabilities. (Figure 20, page 47) And persons with disabilities are more likely to stay poor for an extended period of time. From 1993 to 1996, 17% of adults with disabilities were below the LICO for all four years, as compared to 4% of adults without disabilities. (page 48)

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But the LICO data tell only part of the story. First, the extra costs associated with a disability are not taken into account in LICO at all. While it is very difficult to determine what the extra costs of disability are, as they vary greatly among individuals and families, a careful and thorough British study of the additional costs of disability concluded that they were substantial, that they were higher for persons with disabilities living alone, and that they increased with severity of disability.²⁹ If increased costs of disability are taken into account, the extent and depth of poverty among Canadians with disabilities and their families is much greater than the LICO data would indicate.³⁰

Second, LICO and other common measures of economic disadvantage are typically based on annual income. But annual income does not fully indicate an individual's or family's economic position. Assets, especially savings and home ownership, are important indicators of ability to meet individual and family needs. Conversely, debts are important indicators of inability to meet needs. Typically, persons with disabilities and their immediate families have used up their assets to meet disability-related needs and to cover periods of no income or little income, and may well be in debt. Information on assets and debts would be important to supplement information on annual income, if we are to develop a full picture of the economic disadvantagement of Canadians with disabilities.

A third area where more information would be helpful relates to the sources of disability income. Provincial governments as deliverers of social assistance, workers' compensation boards, the Canada Pension Plan, and disability insurers all have extensive databases regarding their own programs. These data should be used to explore important issues such as the consequences for individuals who are found ineligible for these programs, the consequences of overlaps among the programs, and comparisons among the programs with respect to facilitating re-entry into the workplace.

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Recommendation #23:
Statistics Canada should explore methods of surveying the extra costs of disability, and of the assets and debts of persons with disabilities and their families. Future reports on disability in Canada should include a discussion of the extra costs of disability, of assets and debts, and of the similarities, differences and overlaps among disability income programs, using the best available information.

VII. "Injury Prevention": What Values are Reflected? and "Health Promotion"

[pages 51-61]

This section of Advancing the Inclusion covers a wide range of topics. The five indicators are (page 51):

• disability-free life expectancy
• injury-related hospital admission rate
• occurrence of major diseases and conditions that may cause disability
• physical activity
• opportunity for athletes with disabilities

The common theme linking these topics is not clear, except that all have something to do with health and well-being in general. We shall attempt to identify the main issues these topics present for Canadians with disabilities.

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(a) Prevention and Valuing the Lives of Persons with Disabilities

The presentation and understanding of policies and programs directed at prevention of disability presents a dilemma both for governments and for community organizations. On the one hand, it is important to prevent the negative consequences of medical conditions and injuries. On the other hand, it is equally important that the lives of persons with disabilities themselves not be portrayed as negative and valueless.

Unfortunately, while these issues are briefly identified in this section of Advancing the Inclusion, the fundamental values underlying the policies of the Government of Canada are not articulated clearly. Where it would be important to let Canadians with disabilities know exactly where the Government stands, the report tends towards vagueness and "skating over" the fundamental value issues.

Let us look more closely at the discussion of Disability-Free Life Expectancy (DFLE) as an indicator of the success of disability policy. In Advancing the Inclusion there is the following passage (page 51):

Disability-free life expectancy (DFLE) is an estimate of the number of years a person can expect to live without a serious activity limitation. Some people with disabilities have expressed concern that focusing on disability-free life devalues persons who already have disabilities. They contend that emphasizing prevention reflects society's discomfort with disabilities. But from another perspective, the DFLE is useful both to measure efforts to prevent increasing levels of impairment and to help plan the resources and services that people with disabilities need to live full, active lives.

There are two main problems with this explanation. First, the concern about devaluing the lives of persons with disabilities through focusing on DFLE is attributed to "some people with disabilities", which in context tends to be a dismissive approach. It seems to imply, without saying so directly, that this is a concern only of a minority in the community. Second, while a value of using the DFLE as an indicator is said to be "to help plan the resources and services that people with disabilities need to live full, active lives", there is no illustration or example given in Advancing the Inclusion of this type of use of the DFLE. In fact, no explanation is given of how the DFLE provides any information about persons with disabilities other than the age at which they tend to become disabled.

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The discussion of the Assisted Human Reproduction Act is even more problematic from a values and information perspective.³¹ The report says (page 52):

The Government of Canada has proposed AHR legislation that clarifies what Canadians find acceptable. The proposed legislation contains a parliamentary declaration setting out principles that not only govern the legislation itself, but also apply to all regulations flowing from it and to the independent regulatory agency it sets up. Among these principles, it is clearly stated that human individuality and diversity must be preserved, and that human dignity and rights must be protected and promoted.

What Advancing the Inclusion leaves out is that the proposed Act does not contain the specific principle ensuring the dignity and equality of persons with disabilities which the Parliamentary Committee on Health recommended.³² Because the dignity principle is not fully explicit with respect to persons with disabilities, this leaves it open to interpret the Act in such a manner as to treat this principle as less important than the principles which are explicitly stated.³³

This brief passage in the report also tends to reinforce what seems to be a common misperception of the proposed Assisted Human Reproduction Act as a comprehensive regulatory scheme. In fact, health care and the laws relating to family status are primarily within provincial and territorial jurisdiction in Canada. The proposed federal Act is enacted pursuant to the federal Government's criminal law jurisdiction, and essentially draws the line between activities related to human reproduction that will be subject to criminal sanction, and those that will not. But the more important issues of which activities health professionals and health institutions will be permitted to be involved in, the safeguards for those activities, and which activities will be funded under Medicare, all remain to be dealt with by provincial and territorial legislatures.

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Recommendation #24:
The Government of Canada should adopt, after consultation with Canadians with disabilities and the organizations representing them, an explicit values statement relating to disability issues. This values statement should reflect fully the constitutional equality rights guarantee given to persons with disabilities in Section 15 of the Canadian Charter of Rights and Freedoms. All current and proposed federal legislation should be reviewed to ensure consistency with this values statement. The Government of Canada should strongly encourage all provincial and territorial governments to adopt the same values statement and a similar process of legislative review.

Recommendation #25:
Future reports on disability in Canada should contain full information on developments within health care which may impact on the dignity and equality rights of persons with disabilities, including developments related to human reproduction.

(b) General Injury Prevention and Health Promotion

This section of Advancing the Inclusion contains considerable information on general programs of the Government of Canada directed at the prevention of injury in the workplace and elsewhere, the prevention of violence, medical research, and the promotion of physical fitness and other aspects of healthy lifestyles. While these are all essential programs and important topics, they are of concern to all Canadians and are not specific to persons with disabilities. Discussion of these general programs in this section of Advancing the Inclusion tends to broaden the scope of the report and detract from the focus on persons with disabilities, their families, and the issues they face in their daily lives.

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Recommendation #26:
Future reports on disability in Canada should emphasize aspects of injury prevention and health promotion programs which impact directly on the lives of persons with disabilities and their families.

VIII. "Capacity of the Disability Community": A Strong Beginning

[pages 62-66]

The fifth and final outcome area discussed in Advancing the Inclusion is the capacity of the disability community. In this section, there is a welcome and clearly articulated commitment by the Government to strengthening the role of organizations representing members of this community. A good beginning has been made through the involvement of the Canadian Centre for Disability Studies to learn more about ways in which community capacity can be strengthened.

The focus of the Government's efforts thus far has been national and provincial organizations. Down the road, the crucial local, grass-roots level needs to be part of this initiative as well.

Recommendation #27:
Future reports on disability in Canada should contain information on the capacity of local organizations, and on the supports provided to them by all levels of government.

IX. "Conclusion": Does It All Add Up?

[pages 67-70]

For the most part, the Conclusion to Advancing the Inclusion is a summary of information and ideas dealt with earlier in the report. We will not repeat the earlier analysis here.

It is, however, important to comment briefly on the overview of Government programs with which the report ends. The description of the overview in Advancing the Inclusion reads as follows (page 68):

Table 1 provides an overview of the Government of Canada's principal disability-related benefits and programs for the fiscal year 2001-2002. The total of over $6.5 billion underlines the considerable resources the Government makes available to meet the needs of persons with disabilities. This total consists of approximately $1.1 billion in tax assistance and over $5 billion in program expenditures.

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So while Advancing the Inclusion begins with a commitment to a focus on outcomes for persons with disabilities, and indicators of these outcomes, it ends by emphasizing a "big number". The derivation of the $6.5 billion total is questionable, in that the largest amount of $2.8 billion represents CPP disability benefits, which are paid for by the contributions of workers and employers, and are not allocations from general revenue. The second largest amount, $1.335 billion, is for the Veterans Disability Pension Program, which is important but does not represent an initiative generally available to persons with disabilities. Then there is the inclusion of both the medical expense tax credit ($580 million) and employment insurance sickness benefits ($523 million), neither of which are limited to, or even primarily for, persons with disabilities. These specifics aside, however, the real problem with the "big number" is that it confuses spending with finding effective solutions. If the goal is to understand disability policy better, it is much better to keep a consistent and clear focus on outcomes and indicators, rather than bringing in issues of overall government spending.

Recommendation #28:
Future reports on disability in Canada should focus on outcomes and indicators, and not focus on overall government spending on programs.

Endnotes

1. Obstacles (Ottawa: House of Commons Special Committee on the Disabled and Handicapped, 1981). This and other major federal Government reports on disability are listed in a timeline provided in Appendix I to Advancing the Inclusion.

2. The web site is found at: www.inclusion.com

3. In Unison: A Canadian Approach to Disability Issues (Ottawa: Government of Canada, 1998) and In Unison 2000 (Ottawa: Government of Canada, 2000).

4. There is a general reference to providing information about disability and the justice system in future reports in the Conclusion to Advancing the Inclusion (page 69). Information about employment insurance and health promotion are also mentioned as areas to be covered in future reports.

5. An overview of key aspects of access and inclusion which are essential components of citizenship is found in: A National Strategy for Persons with Disabilities: The Community Definition (Winnipeg: Council of Canadians with Disabilities, 1999), pages 8-11. In addition to CCD, this paper was developed in conjunction with, and endorsed by: CAILC, CACL, CPA, CNIB, CHHA, Aboriginal Reference Group on Disabilities, Neil Squire Foundation, CCRW, DAWN, AMC, NEADS, and LDAC.

6. A detailed framework for analyzing and evaluating collaborative arrangements between the federal Government and other levels of government was developed by the Auditor General of Canada in 1999, and serves as a valuable starting point for considering difficult issues such as accountability in a collaborative arrangement. "Collaborative Arrangements: Issues for the Federal Government", Chapter 5 in the 1999 Annual Report of the Auditor General of Canada (Ottawa: Auditor General of Canada, 1999), found on the Internet at: www.oag-bvg.gc.ca.

7. Statistics Canada Catalogue no. 89-578-XIE (Ottawa: Minister of Industry, 2002). Found on the Internet at: http://www.statcan.ca

8. A good overview of qualitative research is found in a brief article, "Qualitative Measures", by William Trochim of Cornell University at: http://trochim.human.cornell.edu/kb/qual.htm. Trochim provides a good comparison of qualitative with quantitative research, and a good explanation of the value of using both in conjunction, in the following passage: "That's why there is so much value in mixing qualitative research with quantitative. Quantitative research excels at summarizing large amounts of data and researching generalizations based on statistical projections. Qualitative research excels at 'telling the story' from the participant's viewpoint, providing the rich descriptive detail that sets quantitative results into their human context."

9. An excellent Canadian source on qualitative research is the web site of the Centre for Research and Education in Human Services. The Centre was founded by John Lord 20 years ago, and he has been a pioneer in qualitative (or "participatory") research in the disability field in Canada. The Centre's web site is at: http://www.crehs.on.ca. For the applicability of the participatory research model to disability issues, see: Krogh, Kari and Petric, Lenka, Choice, Flexibility and Control in Community Research: A Guidebook (Ottawa: Canadian Association of Independent Living Centres, 1994).

10. There is a very general reference to the importance of looking at the accessibility of mainstream programs in the Conclusion to Advancing the Inclusion (page 69).

11. Page 2 above.

12. Collignon, Frederick C. (1997) The Annals of the American Academy of Political and Social Science, 549 (Special Issue: The Americans with Disabilities Act: Social Contract or Special Privilege), pp. 129-147. I am indebted to Martha McGuire of Cathexis Consulting Inc. for bringing this article, and related resources, to my attention. Ms. Mcguire and Cathexis Consulting have recently developed the framework for evaluating the new Ontarians with Disabilities Act as consultants to the Ontario Ministry of Citizenship.

13. This is also briefly referred to in the Conclusion of Advancing the Inclusion (page 69) where it states: "But the link between the Government's programs and societal outcomes is not always clear, since many factors outside the Government's control can affect outcomes."

14. Duclos, Édith and Langlois, Renée, Disability Supports in Canada, 2001, Statistics Canada Catalogue no. 89-580-XIE (Ottawa: Minister of Industry, 2003).

15. Systemic solutions, however, may not take into account the unique needs which some persons with disabilities have, and these persons still have a legitimate human rights claim to be accommodated on an individual basis, which may require the provision of individualized supports.

16. The Child Disability Benefit is effective as of July, 2003, but will not actually be paid to families until the spring of 2004, when eligible families will receive retroactive payments. It has a maximum value of $1,600 per eligible child. An eligible child must meet the "severe" and "prolonged" test for the Disability Tax Credit. The Benefit is provided to families with eligible children who qualify on an income-tested basis for the supplement to the National Child Benefit. For more details on the Child Disability Benefit, see the Budget Plan 2003 (Ottawa: Department of Finance, 2003), pages 98-99. The Budget Plan is found on the Internet at: http://www.fin.gc.ca/budtoce/2003/budliste.htm .

17. CCD is represented on the Technical Advisory Committee by its National Coordinator, Laurie Beachell. The author is also a member of the Technical Advisory Committee.

18. Federal spending on persons with disabilities is discussed further in this paper in the later section dealing with the "Conclusion" to Advancing the Inclusion.

19. Some information relating to the distribution of these claims is available through the Income Statistics publications of the Canada Customs and Revenue Agency, available on the Internet at: http://www.ccra-adrc.gc.ca/tax/individuals/stats/menu-e.html. (These statistics are available in final form up to the 2000 taxation year, and as interim data for the 2001 taxation year.) But they do not really give us the detail we would like.

20. For example, they tell us that for the 2000 taxation year close to 460,000 DTC claims were made (excluding claims transferred from spouses), and of this number over 265,000 DTC claims were made by persons with total incomes less than $25,000. But we do not know how many of the claimants were persons with disabilities, and how many were family members. For a discussion of the survey data documenting the cuts to special education in Canada in recent years, and their impact on children with special needs and their families, see: Hanvey, Louise, Children with Disabilities and Their Families in Canada: A Discussion Paper (Ottawa: National Children's Alliance, 2002), pages 17-18, available on the Internet at: http://www.nationalchildrensalliance.com/nca/pubs/2002/hanvey02.pdf

21. Working Towards a Coordinated National Approach to Services, Accommodations and Policies for Post-Secondary Students with Disabilities: Ensuring Access to Higher Education and Career Training (Ottawa: NEADS, 1999). NEADS is a national member organization of CCD.

22. The actual figures show just how large the disadvantagement of workers with disabilities is, and how large the further double disadvantagement of women with disabilities is: "The Survey of Labour Income and Dynamics shows a large gap between the earnings of persons with disabilities and those without. In 1998 average earnings for men with disabilities were $13,700, while earnings for men without disabilities were $32,048. For women with disabilities, average annual earnings were $7,190, compared to $17,310 for women without disabilities. (Advancing the Inclusion, p. 39).

23. For the information about employment barriers found in HALS 1991, see Statistics Canada Catalogue No. 82-554-XPB, Adults with disabilities, their education and employment characteristics (Ottawa: Minister of Industry, 1993).

24. The Employment Insurance fund surplus at the end of 2002 was close to $42 billion. See the Human Resources Development Canada document Outlook for EI Premium Rates in 2003, available on the Internet at: http://www.hrdc-drhc.gc.ca/ae-ei/loi-law/pr2003.pdf

25. See the Budget Plan 2003 (Ottawa: Department of Finance, 2003), page 103. The Budget Plan is found on the Internet at: http://www.fin.gc.ca/budget03

26. According to the Statistical Overview of the Canada Pension Plan prepared for the Sub-Committee on the Status of Persons with Disabilities, Table 8, "Vocational Rehabilitation", expenditures by CPP on Vocational Rehabilitation were $4.6 million in 2001-2002.

27. Section 42(2)(1)(i) of the Canada Pension Plan Act provides that "a disability is severe only if by reason thereof the person in respect of whom the determination is made is incapable regularly of pursuing any substantially gainful occupation". So a CPP disability benefits recipient who attempts re-training, education, or return to work may be re-assessed as capable of pursuing some substantially gainful occupation as a result, even if he or she does not actually get a job, and thus will become ineligible for CPP disability.

28. For a description and discussion of LICO and the alternatives to it, see: Ross, David P., Scott, Katherine J., and Smith, Peter J. "Working Definitions of Poverty", Chapter 2 of the Canadian Fact Book on Poverty - 2000 (Ottawa: Canadian Council on Social Development, 2000), also available on the Internet at: http://www.ccsd.ca/pubs/2000/fbpov00/chapter2.pdf

29. Zaidi, Asghar and Burchardt, Tania, Comparing incomes when needs differ: Equivalisation for the extra costs of disability in the UK (London: Centre for Analysis of Social Exclusion, London School of Economics, 2003), on the Internet at: http://sticerd.lse.ac.uk/dps/case/cp/CASEpaper64.pdf

30. There is a reference to the impact of extra disability-related expenses on page 47 of Advancing the Inclusion, but not a full discussion of their significance.

31. The disability implications of the proposed Assisted Human Reproduction Act were covered in a speech entitled "Truth and Consequences: disability in the genetic era" given by disability scholar and activist Catherine Frazee to the 2002 Annual General Meeting of ARCH: A Legal Resource Centre for Persons with Disabilities. Notes prepared by Catherine Frazee for her address were published in ARCH's electronic newsletter ARCHALERT (August 1, 2002) and are available on the ARCH web site at: http://www.archlegalclinic.ca/library/archAlert/2002/03_aug01/index.asp

32. The Report of the Parliamentary Committee on Health, Assisted Human Reproduction: Building Families (December, 2001) included as a principle in a proposed Statutory Declaration of Principles that "persons with disabilities can lead full and satisfying lives and enrich the lives of those around them". The Report is available on the Internet at: http://www.parl.gc.ca/InfoComDoc/37/1/HEAL/Studies/Reports/healrp01-e.htm

33. In a letter addressed to ARCH dated April 8, 2003, the federal Minister of Health, the Honourable Anne McLellan, stated: "I would like to assure you that the Government of Canada has responded to the concerns of Canadians with disabilities and of the Standing Committee on Health by explicitly stating in the Statutory Declaration that human diversity must be preserved and protected." The Minister goes on to refer to the AHRA being interpreted as subject to the Canadian Charter of Rights and Freedoms. But if protecting diversity includes respecting and valuing persons with disabilities, why not say so explicitly, as the Standing Committee recommended? The Minister does not respond directly to this question.

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Summary of Recommendations

Recommendation #1
The Government of Canada should make a commitment to producing an annual report on disability issues in Canada. The report should include information on initiatives taken during the year, and a plan for initiatives to be taken during the next year.

Recommendation #2
Future reports on disability in Canada should be developed and produced with the active involvement of provincial and territorial governments.

Recommendation #3
Future reports on disability in Canada should contain a discussion of additional aspects of the inclusion of persons with disabilities in our society, especially opportunities for involvement in community and political life, and recognition of rights in the justice system and by governments.

Recommendation #4
Future reports on disability in Canada should contain a description of "Government Action" that includes action plans relating to the short-term (the next year), the medium-term (the next two to three years), and the longer-term (the next three to five years). These action plans should be as specific as possible. The data and information in future reports should be selected to facilitate discussion and assessment of these action plans.

Recommendation #5
Future reports on disability in Canada should contain information on provincial and territorial programs and services, including initiatives taken during the year, and a plan for initiatives to be taken during the next year.

Recommendation #6
In 2003, Statistics Canada should develop a plan for consulting the community of persons with disabilities on PALS issues, with the consultation itself to begin in 2004.

Recommendation #7
The Government of Canada should make a strong commitment which ensures that the PALS survey will be carried out and improved in 2006, and in conjunction with the Census every five years in the future.

Recommendation #8:
Statistics Canada, in consultation with organizations representing persons with disabilities, should carry out a feasibility study of a longitudinal survey of persons with disabilities in Canada.

Recommendation #9:
In future, PALS surveys should include all Canadians with disabilities, including those living in institutions, and those resident in the Territories.

Recommendation #10:
Future reports on disability in Canada should utilize information from databases maintained by federal, provincial and territorial governments, by disability organizations, and by health and disability insurers.

Recommendation #11:
Future reports on disability in Canada should utilize information and reports from qualitative, person-centered research, especially information and reports developed by, or with the involvement of, organizations representative of persons with disabilities themselves and of family members of children with disabilities.

Recommendation #12:
Human Resources Development Canada should make the disability definition "synthesis document" available during 2003, and make a commitment to a full consultation with Canadians with disabilities and the organizations which represent them on the content of this document.

Recommendation #13:
Future reports on disability in Canada should include additional outcomes, such as living arrangements, family relationships, and social and recreational opportunities, identified in consultation with organizations representing persons with disabilities.

Recommendation #14:
The Government of Canada should work together with representatives of disability organizations to develop a framework for choosing the most effective indicators of disability policy outcomes, as a basis for future reports on disability in Canada.

Recommendation #15:
Future reports on disability in Canada should contain information on the "double disadvantagement" of persons with disabilities who also belong to other equality-seeking groups, together with an analysis of why this is occurring, and what specific actions are required to address the additional disadvantagement

Recommendation #16:
Future reports on disability in Canada should contain information showing the accessibility of buildings, information sources, services, and communities to persons with disabilities. Where this information is not available, research should be carried out into ways of developing the relevant data.

Recommendation #17:
Future reports on disability in Canada should contain information on the average amounts of tax assistance provided to individuals and families, and on the distribution of this assistance by income class.

Recommendation #18:
Future reports on disability in Canada should include information on the educational opportunities, supports and barriers affecting children and young persons aged 6-21.

Recommendation #19:
The Government of Canada should consult with NEADS regarding information about access to post-secondary education by students with disabilities, and include this information in future reports on disability in Canada.

Recommendation #20:
Future reports on disability in Canada should contain information on the barriers facing persons with disabilities in obtaining suitable employment.

Recommendation #21:
Future reports on disability in Canada should contain fuller descriptions of government initiatives in employment, including the limitations of these programs and services.

Recommendation #22:
Future reports on disability in Canada should contain fuller information on barriers to employment, including information obtained from employers, unions, and employee associations. Barriers should be understood widely as including attitudinal barriers, and barriers created by employee benefit plans, to take two important examples.

Recommendation #23:
Statistics Canada should explore methods of surveying the extra costs of disability, and of the assets and debts of persons with disabilities and their families. Future reports on disability in Canada should include a discussion of the extra costs of disability, of assets and debts, and of the similarities, differences and overlaps among disability income programs, using the best available information.

Recommendation #24:
The Government of Canada should adopt, after consultation with Canadians with disabilities and the organizations representing them, an explicit values statement relating to disability issues. This values statement should reflect fully the constitutional equality rights guarantee given to persons with disabilities in Section 15 of the Canadian Charter of Rights and Freedoms. All current and proposed federal legislation should be reviewed to ensure consistency with this values statement. The Government of Canada should strongly encourage all provincial and territorial governments to adopt the same values statement and a similar process of legislative review.

Recommendation #25:
Future reports on disability in Canada should contain full information on developments within health care which may impact on the dignity and equality rights of persons with disabilities, including developments related to human reproduction.

Recommendation #26:
Future reports on disability in Canada should emphasize aspects of injury prevention and health promotion programs which impact directly on the lives of persons with disabilities and their families.

Recommendation #27:
Future reports on disability in Canada should contain information on the capacity of local organizations, and on the supports provided to them by all levels of government.

Recommendation #28:

Future reports on disability in Canada should focus on outcomes and indicators, and not focus on government spending on programs.

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