IV. DERIVING PRINCIPLE-BASED OUTCOMES FOR THE RIGHTS-OUTCOME LENS2017-03-03T18:35:37+00:00

Having outlined the theoretical framework and principles, we take that framework and use it to further interpret the principles to derive outcome measures.  In this way, the theoretical framework begins the process by suggesting principles and then operates to contextualize and interpret the principles.  For the purposes of this paper, we considered this analysis within the context of eligibility criteria for income support programs.  In so doing, we have identified a number of outcome measures. A discussion of each of the principles, along with the corresponding outcome measures follows.

 

A.    Respect for the Dignity and Worth of Persons with Disabilities

In R. v Kapp, McLachlin C.J.C. and Abella J. note:

There can be no doubt that human dignity is an essential value underlying the
s. 15 equality guarantee. In fact, the protection of all of the rights guaranteed by the Charter has as its lodestar the promotion of human dignity.[22]  

In Eldridge v. British Columbia (Attorney General), La Forest J. recognizes that s.15 (1) of the Charter “expresses a commitment — deeply ingrained in our social, political and legal culture — to the equal worth and human dignity of all persons.”[23]  While dignity is often stated as a key aspect of disability laws and policies, it is a difficult quality to understand in practice.  How does a disability-related support program incorporate dignity?  In Andrews v. Law Society of British Columbia,[24] McIntyre J. states that Charter, s.15(1)  “entails the promotion of a society in which all are secure in the knowledge that they are recognized at law as human beings equally deserving of concern, respect and consideration.”  McIntyre J.’s description, although not speaking directly of dignity, incorporates that idea within the context of equality and inclusion.  Indeed, the principles often inform one another and their co-existence provides additional considerations for analysis. 

When considering future disability policy in Canada, Michael Prince notes that disability-related supports are a fundamental mechanism for ensuring that persons with disabilities enjoy the same rights and freedoms as others:

Disability supports is an issue of employment – indeed, that has been the prime focus of much programming of late. Disability supports is also an issue of mobility and human rights; of independent living, learning and community participation; of personal and social development; of supporting families and caregivers; and, in a definitive way, an issue of inclusion, citizenship and dignity.[25]

Seen in this light, accessible, adequate and effective disability-related supports are directly related to dignity:

A critical need exists for improved and enhanced supports and services. Today, services and supports are fragmented, often unavailable or unaffordable, not portable across life transitions or place, and all too often disempowering or stigmatizing to those seeking a modicum of assistance to live in dignity and to be active citizens.[26]

Since disability-related support programs play an essential role in the lives of persons with disabilities, impacting their ability to participate on equal terms with others in the community, the principle of dignity is a concept that must underlie the development of those programs.  In addition, dignity impacts how programs are administered; how individuals gain access to the programs; and how people maintain services and benefits over time. 

In general, the provision of income support in Canada has shifted over a number of decades. This shift has been consistent with changes occurring in the broader international context and has been influenced by complex narratives of economic structuring, understanding of disability and frameworks of social responsibility to those who are disadvantaged.[27] The theme of fiscal restraint has driven social assistance policy for more than thirty years and choices to narrow eligibility criteria and reduce benefits have disproportionately impacted persons with disabilities as they are more likely to require low-income programs than others.[28]  Prince argues that national disability policy has begun to embrace the recognition of persons with disabilities as citizens rather than charity recipients, in large part due to Charter jurisprudence and international laws including the CRPD.[29]  While disability policy has been evolving to recognize the inherent citizenship of persons with disabilities and the socially constructed nature of exclusion, governments have simultaneously taken steps to reduce their own financial responsibility for low-income supports.[30]

If we view persons with disabilities as full citizens, with entitlement to the rights and responsibilities of citizens, as reflected by the above jurisprudence, national policy and the CRPD, disability-related income supports must reflect that approach rather than adopting a charity perspective and must acknowledge dignity as a core value.

 

Outcome Measures:

As such, respect for the dignity and worth of persons with disabilities lead to the following outcome measures: 

·      Income Allowances that Promote Acceptable Living Standards

·      Asset Allowances that Promote Acceptable Living Standards

·      Accessible and Respectful Administrative Processes for Eligibility Determination

 

B.    Autonomy and Independence

Autonomy and independence are about the freedom of an individual to be in charge of his or her own life. Autonomy focuses on the opportunity to choose for oneself while independence refers to doing for oneself, with adequate support where required.

Eligibility criteria for disability-related income support programs must be designed and implemented in a manner that gives persons with disabilities the option to choose and do for themselves.  For example, the way in which eligibility criteria impact relationship dynamics must considered. In Falkiner v Ontario, the Ontario Court of Appeal found that single mothers receiving social assistance and living with men who were not the biological fathers of their children but with whom they had some arrangements for sharing household expenses, were not required to rely on these men for support. Social assistance payments could not be reduced or eliminated simply because these relationships existed. The Court found:

Beyond purely financial concerns, more fundamental dignity interests of the [applicants] have been affected. Being reclassified as a spouse forces the [applicants] and other single mothers in similar circumstances to give up either their financial independence or their relationship … Forcing them to become financially dependent on men with whom they have, at best, try-on relationships strikes at the core of their human dignity.[31]

 

When considering eligibility for disability-related income support programs, the principles of autonomy and independence require that eligibility criteria take into consideration the importance of persons with disabilities determining and securing their own financial independence.  How the program defines the benefit unit has a considerable impact on whether individuals meet the financial eligibility criteria for such programs.  Rules restricting the acquisition of assets and earning of income often limit one’s eligibility for disability-related income supports.  The principles of autonomy and independence must be considered when developing and enforcing such rules.

For example, a review of provincial disability-related income support programs across Canada demonstrates that most programs exempt inheritances if the program recipients are restricted from making decisions regarding the inherited proceeds.  A relationship of dependency between a trustee and the recipient as beneficiary of a trust is created to ensure that the inherited proceeds do not make the recipient ineligible for benefits under the program.  As a result, the decision-making rights of recipients are compromised and the possibility of future financial independence is also diminished. .

Outcome Measures:

As such, the principles of autonomy and independence lead to the following outcome measures: 

·         Definition of the Benefit Unit that Empowers the Individual

·          Income Allowances that Promote Acceptable Living Standards

·         Asset Allowances that Promote Acceptable Living Standards

 

 

C.    Inclusion and Participation

Inclusion and participation mean that society is organized – both in its public and private dimensions – to enable all people to engage fully. Full inclusion requires that persons with disabilities be recognized and valued as equal participants whose needs are considered essential to society and not “special”.  Prince notes that “people with disabilities and their families experience undue hardship and are restricted from full and active participation in economic, educational and social life”[32] because of a failure to develop programs and systems that promote inclusion:

Canadians with disabilities have long been disadvantaged, marginalized and stigmatized. While some important advances have occurred over the last 20 years – including some program reforms recently introduced at both the federal and provincial/territorial levels – there also have been many setbacks and erosions in supports, as well as continued challenges in everyday living and barriers to participation in schools, work, community activities, public services and facilities. Research and experience show that both generic and disability specific community services are inadequate in meeting existing needs.[33]

The Supreme Court described the impact of policies and laws that exclude in Eaton v.

 

Brant County Board of Education:[34]

 

Exclusion from the mainstream of society results from the construction of a society based solely on “mainstream” attributes to which disabled persons will never be able to gain access. Whether it is the impossibility of success at a written test for a blind person, or the need for ramp access to a library, the discrimination does not lie in the attribution of untrue characteristics to the disabled individual. The blind person cannot see and the person in a wheelchair needs a ramp. Rather, it is the failure to make reasonable accommodation, to fine-tune society so that its structures and assumptions do not result in the relegation and banishment of disabled persons from participation, which results in discrimination against them.

 

Despite the reality of on-going exclusion, national policies have embraced the concept of inclusion and full participation, endorsing a position that:

…strongly affirms the fundamental entitlement to equal citizenship of people with disabilities, and includes commitments to facilitate inclusion and participation as full citizens in all aspects of Canadian society, with provision of supports needed to achieve this goal.[35]

 Further evidence of the government’s commitment to the principles of inclusion and participation was evidenced by Canada’s March 11, 2010 ratification of the CRPD which adopts these principles. 

Some disability-related support programs have embraced the idea of “inclusion and full participation” by emphasizing strategies to increase the employability of persons with disabilities.  Other programs have been based on the premise that work integration should play an increased role in disability-related support programs as opposed to “passive cash transfers.”[36]  Indeed, ensuring that persons with disabilities can fully participate in employment is an important aspect of inclusion and independence.   Employment provides economic, social and psychological benefits as acknowledged by the Supreme Court:

Work is one of the most fundamental aspects in a person’s life, providing the individual with a means of financial support and, as importantly, a contributory role in society. A person’s employment is an essential component of his or her sense of identity, self-worth and emotional well-being.[37]

Nonetheless it must be acknowledged that full work integration cannot exist where there continue to be environmental, social and attitudinal barriers that prevent access to employment.[38]  Further, regardless of accommodations, some persons with disabilities will never be able to participate in the workforce, or will be able to do so only intermittently, based on their own embodied experience of impairment.  Workplace integration is one aspect of developing disability policy but it cannot redress social exclusions alone.  Policies promoting work integration alone cannot fulfill the government’s obligation to promote inclusion and full participation. 

Outcome Measures:

As such, the principles of inclusion and participation lead to the following outcome measures: 

Definition of the Benefit Unit that Empowers the Individual
Income Allowances that Promote Acceptable Living Standards
 

 

D.    Equality and Non-Discrimination

Equality means creating social conditions that respect difference, address disadvantages and ensure that all women, men, girls and boys participate fully on equal terms. In the context of disability, equality requires creating societal conditions that allow for difference while addressing disadvantage, in order to guarantee the equal participation and inclusion of people with disabilities in all aspects of society.  Since its decision in Andrews, the Supreme Court of Canada has held that section 15 of the Charter guarantees substantive, and not just formal, equality.[39] The Supreme Court has recognized that the principle of equality does not necessarily require identical treatment since a “like treatment” model of discrimination may, in fact, produce inequality.[40] In Eldridge v. British Columbia (Attorney General), the Supreme Court held that discrimination can result from the failure to take positive steps to ensure that disadvantaged groups benefit equally from services offered to the general public, subject to the principle of reasonable accommodation.[41] In Eldridge, this meant requiring the provision of sign language interpretation services to ensure that deaf persons can communicate effectively with their health care providers.[42] Rioux further elaborates stating that “well-being” should be the outcome:

The weakness of the formal and equal opportunity models of equality for disability could be overcome by a model of equality based on well-being as an outcome.  This concept of equality incorporates the premise that all humans — in spite of their differences — are entitled to be considered and respected as equals, and have the right to participate in the social and economic life of society.  Unlike the other models of equality it would take into account the fact that the conditions and means of participation may vary for each individual, entailing special accommodation to make participation possible.  While the outcome — equality of well-being — would be universal, the programs or means to ensure equality could justifiably be targeted to enable those least able to achieve well-being to be supported on a temporary or long-term basis.  Difference would both be acknowledged and be accommodated in ensuring the outcome.[43]

Based on this interpretation of equality, the determination of disability status for income support programs must take into account differences in the effect of various impairments in the context of each individual’s own circumstances.[44]

Equality of well-being also speaks to ensuring that such programs strive to reduce inequalities in income between persons with disabilities and others.  In 2006, the poverty rate for persons with disabilities in Canada was 14.4%, encompassing approximately 600,000 people.[45]  Gilmour argues that the socio-economic environment is a key determinant of health; therefore, reducing income inequalities is a critical factor in improving the general health and well-being of persons with disabilities.[46]  Although evaluating social assistance levels is beyond the scope of this paper, these inequalities should be taken into consideration when setting the rules governing income and asset limits for disability-related income support programs.  

 

The principle of non-discrimination means that all rights are guaranteed to everyone, without distinction, exclusion or restriction based on disability, race, sex, language, religion, political or other opinion, national or social origin, property, birth, age, or any other status. Discrimination means any distinction, exclusion or restriction which has the purpose or effect of denying the recognition, enjoyment or exercise by persons with disabilities, on an equal basis with others, of all human rights and basic freedoms. Persons with disabilities might also experience multiple forms of discrimination, for example, a woman with disabilities might experience discrimination on the basis of sex as well as disability.

The issue of what and what is not considered discriminatory with respect to the provision of benefits has been addressed by the Supreme Court.  In Auton (Guardian ad litem of) v. British Columbia (Attorney General), the Court stated:

…Where stereotyping of persons belonging to a group is at issue, assessing whether a statutory definition that excludes a group is discriminatory, as opposed to being the legitimate exercise of legislative power in defining a benefit, involves consideration of the purpose of the legislative scheme which confers the benefit and the overall needs it seeks to meet.  If a benefit program excludes a particular group in a way that undercuts the overall purpose of the program, then it is likely to be discriminatory; it amounts to an arbitrary exclusion of a particular group.  If, on the other hand, the exclusion is consistent with the overarching purpose and scheme of the legislation, it is unlikely to be discriminatory.  Thus, the question is whether the excluded benefit is one that falls within the general scheme of benefits and needs which the legislative scheme is intended to address.[47]

This suggests that the operational objectives of any benefit program must be consistent with its purpose.  Eligibility criteria for income support programs must therefore ensure that individuals are not discriminated against by underinclusive legislation and jurisprudence.

Outcome Measures:

The following outcome measures for equality and non-discrimination are suggested:

·          Definition of Disability that Recognizes Individual Experience

·          Recognition of Disability as both an Embodied Experience and a Social Construct

·          Income allowances that promote acceptable living standards

·          Asset allowances that promote acceptable living standards

 

E.  Recognition that humans vary infinitely along a spectrum of abilities and that society must accommodate these variances into its mainstream

 

This principle encompasses two key ideas. First it recognizes that differences among individuals are inherent to the human condition. Second, it addresses the need to ’mainstream’ disability policy within general services and programs offered by the government. While the general topic of mainstreaming is outside the scope of this paper since we are focusing on the provision of disability-specific programs, the failure to mainstream access will be briefly mentioned below, in the application of the Rights-Outcome Lens to ODSP.

The other aspect of this principle calls for the normalization of all human experiences, including the experience of living with a disability.  Respect for differences in abilities involves acceptance of all people, including persons with disabilities, as part of human diversity and humanity. Despite some visible or apparent differences, all people have the same rights and dignity. Each person will experience disability differently. Different types of impairments will have different implications for health and individual capacity as will different types of attitudinal and structural barriers. The responsibility to change falls not on the individual but on the State and civil society which must accept diversity and respond to the difference that disability represents by ensuring that there is a place for all within the mainstream.  In Andrews v. Law Society of British Columbia,[48] McIntyre J. noted that the “accommodation of differences . . . is the essence of true equality”, recognizing that the purpose of Charter, s. 15(1) is not only to prevent discrimination by the attributing stereotypes to individuals, but also to improve the position of groups within Canadian society who have suffered disadvantage by exclusion from mainstream society.

Considering only the physical aspects of disability ignores the fact that it “is a far more complex phenomenon” which includes a vast array of conditions and categories of illness “the symptoms of which are not verifiable in a urine sample, blood test or x-ray.”[49] Adopting a broad conceptualization of disability, the Supreme Court has said that the concept of disability cannot be one that lacks flexibility and should encompass a multi-dimensional approach that considers socio-political dimensions including prejudice and stereotypes.[50]

This is consistent with both the World Health Organization (WHO) definition and the inclusive definition espoused by the CRPD.  WHO refers both to the social and individual causes of disability:

Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives. [emphasis added].[51]

Yet, as noted in the above section, a “disability” may exist regardless of barriers.  In the theoretical framework that we have adopted, it is recognized that personal experiences of symptoms may be, in and of themselves, disabling, and may limit activities regardless of the existence of barriers. 

In order to meet this principle, eligibility criteria for disability-related support programs must acknowledge a broad range of individual experiences that may lead to impairment, including the environmental, social and attitudinal barriers that exclude individuals.   Similarly, assessment and verification of disability may be, in part, a medical process; however, medical assessment will provide only one perspective of disability.  Recognizing that medical professionals cannot fully verify a disability that may have non-medical origins is an important element in any eligibility criteria.   As such, verification measures must encompass a broad understanding of the cause of disability, not only medical assessments.

Outcome Measures:

Recognition that humans vary infinitely along a spectrum of abilities and that society must accommodate these variances into its mainstream suggests the following outcome measures:

·       Definition of Disability that Recognizes Individual Experience

·       Recognition of Disability as both an Embodied Experience and a Social Construct

·       Definition of Disability that Reduces Medicalization

 

F.         Respect for Diversity and the Experience of Disability

Among persons with disabilities, there are more disparities than similarities. As such, the ability to shift social values toward substantive equality (as discussed above) is challenging:

Persons with disabilities form a very diverse group, with very different life circumstances, types and severity of disability, and face a range of different barriers. A teenager with an invisible disability, such as a learning disability, finds herself confronted not only with the difficulties associated with a disability, but also with the lack of understanding and recognition of that disability by other people. Consequently, a range of interventions is required. In particular, personalized approaches, with services adapted to the particular needs of each individual, are most likely to be successful.[52]

 

Even where individuals may have the same category of condition, their own experience with that condition may be different:

But the presence of a disability does not affect everyone the same way and to the same extent. “Disabilities run the range from relatively mild to profound. Their consequences may be very different. Some disabilities affect physical functioning, stamina, cognition, memory; many affect the person in a combination of these and other ways. Some disabilities can be accommodated easily in the workplace, home and elsewhere, while others cannot. The effect of a disability on an individual’s life, and that of his or her family, often includes many intangible social and psychological obstacles which are not easily capturable in an inventory of the person’s functional limitations.” [53]

 

This approach was affirmed by the Supreme Court in a human rights decision:

A disability, unlike, for example, race or colour, may entail pertinent functional limitations. . . . An individual may suffer severe impairments that do not prevent him or her from earning a living. Beethoven was deaf when he composed some of his most enduring works. Franklin Delano Roosevelt, limited to a wheelchair as a result of polio, was the only President of the United States to be elected four times. Terry Fox, who lost a leg to cancer, inspired Canadians in his effort to complete a coast‑to‑coast marathon even as he raised millions of dollars for cancer research. Professor Stephen Hawking, struck by amyotrophic lateral sclerosis and unable to communicate without assistance, has nevertheless worked with well‑known brilliance as a theoretical physicist. (Indeed, with perhaps bitter irony, Professor Hawking is reported to have said that his disabilities give him more time to think.) The fact they have steady work does not, of course, mean that these individuals are necessarily free of discrimination in the workplace. Nor would anyone suggest that, measured against a yardstick other than employment (access to medical care for example), they are not persons with daunting disabilities.

The concept of disability must therefore accommodate a multiplicity of impairments, both physical and mental, overlaid on a range of functional limitations, real or perceived, interwoven with recognition that in many important aspects of life the so-called “disabled” individual may not be impaired or limited in any way at all.[54]

Economic status, particularly the impact of poverty, also creates a distinction among persons with disabilities.  Where an individual has access to resources that can ameliorate limitations or can overcome social barriers, their experience of disability (or the absence of disability from their difference) will be distinct from a person who does not have similar resources.  Other social factors, including age and education will also impact the way in which impairments are experienced.

Gender, race, cultural background and sexual orientation influence how individuals will experience or express disability.  For example, some disabilities are more prominent among certain cultural groups or are more often experienced by a particular gender.  Jongbloed notes that multiple sclerosis affects women at a rate double that of men and its symptoms are often invisible, difficult to document and predict.[55]  As a consequence, eligibility requirements that fail to encompass the experiences inherent to multiple sclerosis will have a differential impact on women.  Similarly, cultural differences influence the degree to which mental illness may be acknowledged or treatment sought.[56]  Given that some individuals will not approach their doctor or report particular symptoms and limitations, preferring to downplay their experience due to internalized or cultural stigma and discrimination, eligibility criteria must also acknowledge these types of cultural differences to avoid unintentional or systemic discrimination.

Outcome Measures:

Respect for diversity and the experience of disability suggests the following outcome measures:

·         Definition of Disability that Recognizes Diversity among Persons with Disabilities

·         Recognition of Disability as both an Embodied Experience and a Social Construct

 

This section has reviewed the six principles and identified the outcome measures that flow from each.   The next section addresses the resulting evaluative tool, or Rights-Outcome Lens, in more detail.

 

 

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