Disability Research Bulletin 2003-2004 Message from the Director General Office for Disability Issues, Social Development Canada Welcome to the latest Disability Research Bulletin. Since the last issue, there have been extensive changes here at the Office for Disability Issues (ODI). We’re happy to announce that we have grown from a division to a full directorate with enhanced research, policy and program capacities. ODI is now part of Social Development Canada (SDC), a new department created by the Government of Canada on December 12, 2003. We continue to play a leadership role on a host of disability files, creating, developing and disseminating disability information. In the recent Speech from the Throne, the Government of Canada recognized persons with disabilities as a priority on its policy agenda. In this context, knowledge development is critical to designing sound policies and programs. It also guides meaningful dialogue and collaboration with the provinces and territories, with other federal departments and agencies, and with the disability and research communities. In creating ODI as a directorate, we have also created a Knowledge Development Unit with the goal of analyzing and synthesizing available disability-related research and developing original research. We have also improved funding criteria under the Social Development Partnership Program (SDPP) to further enhance the quality of community-based research. The Disability Research Bulletin is but one of many tools we use to share useful research-based knowledge developed by governments, research institutes, academics and nongovernmental organizations. While most of the articles in this issue summarize recent and unpublished research reports that ODI funded through SDPP, you will also find publications and preliminary findings of research produced by the Knowledge Development Unit. And we have included useful disability-research related websites and announcements of future conferences and research events. We hope to provide, in the Disability Research Bulletin, a unique showcase for academic and community-based research and a forum for knowledge dissemination and exchange. Deborah Tunis Director General Office for Disability Issues Publications Disability in Canada: A 2001 Profile (December 2003) Published on the occasion of the United Nations International Day of Disabled Persons (December 3, 2003), this report draws a national demographic profile of disability in Canada, using data from the Participation and Activity Limitation Survey (PALS), a 2001 survey sponsored by the Government of Canada. PALS gathered information on 35,000 adults and 8,000 children with disabilities living in Canada. [1] Selected Key Findings: • Some 3,601,000 Canadians have a disability — that’s one in eight. • While the overall rate of disability in Canada is 12.4 percent, the rate of disability increases with age: from 3.3 percent among children, to 9.9 percent among working-age adults (15 to 64), and 31.2 percent among seniors 65 to 74 years of age. Disability rates are highest among older seniors (75 and over), with fully 53.3 percent in this age group reporting a disability. • The majority of Canadians with disabilities have mild to moderate disabilities. Overall, children with disabilities are slightly more likely to experience severe to very severe disabilities than are working-age persons or seniors with disabilities. However, this pattern varies from one province to the next. • Mobility, agility, and pain-related disabilities are by far the most common types, each accounting for approximately 10 percent of reported disabilities nationally. Four percent of respondents reported a hearing limitation. • About 1 percent of the population overall have psychological disabilities, while 2 percent have learning- and 2 percent memoryrelated disabilities. • Learning disabilities are prominent among children of school age and young adults, but less common among seniors. In addition to providing basic disability rate statistics from PALS, Disability in Canada presents information about issues facing Canadians with disabilities; including challenges in relation to education, employment, income, access to supports and assistive technologies required for daily living. Disability in Canada: A 2001 Profile is available from the website of the Office for Disability Issues, at www.sdc.gc.ca/en/gateways/topics/pyp-pup.shtml. To order the document in alternative formats (large print, audio cassette, Braille and computer diskette) in French or English, just call: 1 800 788-8282. Defining Disability: A Complex Issue (December 2003) This document was produced in response to a recommendation made in 2002 by the House of Commons Subcommittee on the Status of Persons with Disabilities. It provides a descriptive analysis of the disability definitions used by the major programs and laws dealing with persons with disabilities in various areas under federal jurisdiction. Overall, the report illustrates the complex, multidimensional nature of the concept of disability. It also highlights the fact that confusion exists between the theoretical definition of disability and its operational definition, based on eligibility criteria for services and benefits. The paper concludes that a single, generic definition is not possible for programs that have different goals, and address needs and situations that vary from one individual to the next. The report includes four annexes: the community perspective on the issue of definition, an overview of this issue in laws and programs under provincial and territorial jurisdiction, a review of the issue in other countries and, finally, a summary of the programs and laws examined in this report. The report is available on SDC’s website: www.sdc.gc.ca/en/gateways/topics/pyp-pup.shtml -------------------------------------------------------------------------------- 1. PALS did not cover people living in institutions and people residing in Yukon, the Northwest Territories, Nunavut and on First Nations reserves. ODI Research in Progress Knowledge Development Unit (January 2004) Low-income families, with children with disabilities Low-income families with children with disabilities have an average family income 34 percent below the pre-tax low-income cut-off (LICO), as established by Statistics Canada. The gap in rural areas is 23 percent and in urban areas 35 percent. Statistics Canada defines the LICO as the income below which a family will tend to spend 20 percentage points more of its income for food, shelter and clothing than the average family. There are seven categories of family size — ranging from one person living alone to families with seven or more members — each with a different income limit. The analysis also takes into account five categories of area of residence — from rural areas to urban areas with a population greater than 500,000. Only pre-tax LICO is used in this analysis because it’s the only one available in PALS.2 Over the next few months, the Office for Disability Issues plans to explore in depth the issue of low income among persons with disabilities. Results will be published in the next federal report, planned for December 2004. Figure 1: The gap between average low household income for children with disabilities and before-tax (LICO, Canada). Development of an Indicator for “Potentially Employable” Persons with Disabilities (February 2004) According to the Participation Activity and Limitations Survey (PALS), persons with disabilities have a lower labour force participation rate than persons without disabilities: 51.3 percent are out of the labour force, 5.2 percent are unemployed and only 43.5 percent have a job, as compared to 20.6 percent, 5.6 percent and 73.8 percent, respectively, among persons without disabilities. What we need to know is: of those persons with disabilities who are out of the labour force or unemployed, what percentage are “potentially employable”? Since the PALS did not directly address this, it was necessary to create a new variable that would enable us to develop an operational de. nition of the concept of “potentially employable”, taking into account factors preventing working-age persons with disabilities from working. The following operational definition was developed: any persons with disabilities (aged 15 to 64) who answer “no” to either of the following questions: • Does your condition affect your ability to look for work? • Does your condition completely prevent you from working at a job or in a business? However, it should be noted that, of those answering “yes” to both questions, some may be potentially employable, for example, some persons answered “yes” but stated elsewhere that they intended to look for work within the next 12 months. Of the persons with disabilities who were out of the labour force or unemployed, 207,430 (32 percent) stated that their disability did not completely prevent them from working or looking for work. If we also include those who stated that their condition did prevent them but that they intended to look for work within the next 12 months (16,656), those who did volunteer work (120,545) and those who were pursuing postsecondary education (7,070), we obtain a total of 351,702 (33 percent) who are potentially employable. Of those persons with disabilities of working age (15 to 64) who stated that their condition (disability) prevented them from working or looking for work, 90 percent were out of the labour force and 10 percent were unemployed. Of those who stated that their condition did not prevent them from working or looking for work, 77 percent were out of the labour force and 23 percent were unemployed. Some 32 percent of those persons with disabilities who stated that their condition prevented them from working had a mild to moderate disability. This is quite significant, since vocational rehabilitation programs consider such persons “employable”. The interaction between a disability and environmental factors poses a barrier to the potential employability of persons with disabilities who are “unemployed” or “out of the labour force”. Of the population out of the labour force, 28 percent stated that one or more environmental barriers deterred them from looking for work. Where those barriers interacted with the disability, the deterrence rate rose to 72 percent (see Figure 2). Figure 2 Barriers to Potential Employability Environmental barriers alone: 28% Environmental barriers plus condition (disability): 72% Physical barriers, negative attitudes, few or no workplace accommodation measures — and their interaction with the disability condition — all prevent persons with disabilities from achieving their potential in terms of work. • In her book Living with Disabilities in Canada: An Economic Portrait (1996), Gail Fawcett examined the issue from the perspective of “the hidden unemployed” using the Health and Activity Limitations Survey (HALS). She found that, of the persons with disabilities who were out of the labour force, 31 percent were potentially employable. Gail Fawcett’s method, when replicated, produced an estimated overall potential employability of 376,251 persons (32 percent). In view of the critical importance of related policies, the ODI will continue to explore this issue in the coming months. -------------------------------------------------------------------------------- 2 After-tax low income cutoffs, and the resulting after-tax rates, have been published back to 1980. The number of people falling below the cutoffs has been consistently lower on an after-tax basis than on a before-tax basis. This result may appear inconsistent at first glance, since incomes after tax cannot be any higher than they are before tax, considering that all transfers, including refundable tax credits, are included in the definition of "before-tax" total income. However, with a relative measure of low income such as the LICO, this result is to be expected with any income tax system which, by and large, taxes those with more income at a higher rate than those with less. "Progressive" tax rates, as they are often called, make the distribution of income more compressed. Therefore, some families that are in low income before taking taxes into account are relatively better off and are not in low income on an after-tax basis. Source : Statistics Canada. Income Trends in Canada 1980-2000 – User’s Guide by Pina Lanovara Publication by the Strategic Policy Knowledge Directorate Working-Life Income Trajectories—Long Term Effects of Reliance on Common Disability–Related Income Supports in Canada This study examines the impacts of differing income security programs on the long-term income trajectories of working-age persons following an incapacitating accident or injury. The objective is to compare the effects of reliance on various combinations of employment income and disability-related income supports currently available. The study summarizes and examines the implications of a series of common disability-related “scenarios” by viewing resultant income “trajectories” — expected annual incomes over adult working-age years. These trajectories vary based on how the incapacity occurred and the duration/severity of the disability. Results are generalized to show the varying effects of the age at which the accident or injury occurred and of returning to work at various reduced levels of functional capacity. In particular, the study illustrates that: • There are significant variations in the level of income support available, and these variations are a function of how persons become incapacitated and how they are covered. As a result, there is not necessarily a relationship between need and either the availability or level of support. • The system of income security programs is complex and there is considerable potential for interactions among elements of the system involving various levels of government and the private sector. Safety net efficiency and effectiveness is thus an important issue. • Persons able to participate in the labour force following a long-term injury or illness clearly tend to fare better economically. Employment earnings tend to lead to better earnings trajectories — even if the resultant work is part-time or at a different job; this underlines the importance of work incentives and rehabilitation. However, income loss is highly likely because of foregone experience or lost seniority. • There are circumstances where, for those taking on part-time work or work at significantly lower levels of remuneration, current program-based compensation mechanisms can reduce incentives to seek more work or work requiring a higher level of capacity. • There is a very significant relationship between number of years of employment prior to incapacity and working-age earnings. On the one hand, persons who become incapacitated early on in a career are highly vulnerable; the scenarios indicate particularly large impacts. On the other, disability occurring later in a working career can often mean less in income loss both in the short-term and in term of overall work-age income loss. The Social Development Partnership Program – Disability Component The Social Development Partnership Program (SDPP) provides grants and other funding to non-profit organizations working to meet the social development needs of persons with disabilities, children and their families, and other vulnerable or excluded populations in Canada. The following projects were funded under the terms and conditions of SDPP and were selected for publication in this issue of the research bulletin because of their unique contribution to disability knowledge development. For more information on SDPP, consult the following website: http://www.sdc.gc.ca/asp/gateway.asp?hr=en/hip/sd/05_SDPP.shtml&hs=vxi Published Research Projects Funded by SDPP Muscular Dystrophy Canada (October 2003). In Synchrony: Looking at Disability Supports from a Progressive Disability Function The Health Charities Council of Canada is a partnership between six national health charities that serve 660,000 Canadians with a variety of degenerative diseases: Muscular Dystrophy Canada, the Huntington Society of Canada, the Parkinson Society Canada, the ALS Society of Canada, the Alzheimer Society of Canada and the Multiple Sclerosis Society of Canada. The Council has conducted a research project called “In Synchrony: Looking at Disability Supports from a Progressive Disability Function” to analyse existing inadequacies and differences in services and funding provided to persons with a progressive disease. Recommendations were formulated from the results of the research, including a new definition of progressive disability that includes progressive diseases affecting the brain. The study helped to clarify a number of problems concerning support services experienced by persons with progressive disabilities. Many needs related to progressive disabilities are not met by existing policies and services, simply because people are generally unaware of them or do not readily understand the situation. According to this study, services are perceived as difficult to find (because of a lack of information) and difficult to access (because there are multiple providers). The procedures are rigid, do not meet the individual and special needs of persons with this type of disability and are unavailable in many rural areas. There is limited coordination of services between the various provincial/territorial providers. And there is little recognition of the economic impact of living with a progressive disability. The study recommends that, in order to resolve these problems, we adopt a definition of “progressive disability”. A person with a progressive disability is defined as follows: a person affected by a disease or disorder that has an impact on the physiology of the brain, nervous, and/or musculoskeletal system, and results in functional limitations whose severity can progress continuously or be cyclical or intermittent in rate of progression. We must recognize that persons with progressive disabilities are at increased risk for general health problems and face increased attitudinal and environmental barriers to support services and social participation. These services must be universally available, regardless of income or location, and must have an easily recognizable access point at all levels of government. The issue of assessment and reassessment of “progressive disability” must also be resolved through a multidisciplinary approach based on individualized service programs and individualized intervention programs. The Roeher Institute (2004) Improving the Odds: Disability, Employment and Public Programs in Canada This research explains the low employment levels of people with disabilities in part by pointing to general demographic factors (e.g., age, gender, education, geographic location) that have a bearing on employment. It also points to factors that are specific to disability, such as the nature, cause and duration of disability, and the need for job accommodation. The research describes legislative, policy and program tools for addressing the challenges faced by persons with disabilities in the labour market (e.g., “Report to Premiers by the Provincial/Territorial Ministerial Council on Social Policy Reform and Renewal”; “In Unison: A Canadian Approach to Disability Issues; Social Union Framework Agreement”; etc.). It also examines general health, social services and support measures funded by the federal, provincial and territorial governments, and compensatory measures such as Workers’ Compensation, Canada and Quebec Pension Plan disability bene. ts, the Employment Insurance sickness bene. ts, and provincial and territorial social assistance. The research then analyses and assesses measures that facilitate access to and participation in the labour market (e.g., assessment, counselling, information, coordination and linkage programs; education, and training programs; and transition programs and financial and technical disability supports, anti-discrimination measures and supports for employers). Participants in the research generally rank “high” all the above-mentioned elements of the labour market system, with education, training and continuous disability supports as key elements. The research shows that many elements of this labour market “system” interact with one another; all need to be taken into account in efforts to frame a comprehensive response to the labour market challenges faced by people with disabilities. The study concludes with a number of suggestions as to how to ensure a successful integration of persons with disabilities into the labour market. Learning Disabilities Association of Canada (2003) Roadmap on Learning Disabilities for Employers The Roadmap on Learning Disabilities is published and distributed by the Learning Disabilities Association of Canada and funded by the Office for Disability Issues, Social Development Canada. “As an employer or a human resources professional responsible for creating and sustaining an effective and motivated workforce, the Roadmap on Learning Disabilities for Employers provides you with the most up-to- date information on learning disabilities and their impact on the workplace. It was created to help you learn best practices — that is, the approaches and strategies surrounding disclosure, accommodations and assessment that employers have found helpful. It goes into some detail about the various types of learning disabilities, and their possible effects on employees’ performance and personal wellbeing, as well as on their working relationships.” The guide includes sections that deal with the following subjects: • building an inclusive work environment; • what are learning disabilities and their effect on job performance; • effects of learning disabilities on job relationships; • the importance of the diagnosis; • the two sides of disclosure; • meeting the needs through accommodation; • the legal responsibilities of employers; • supporting employees with learning disabilities just makes good business sense; • resource section that includes local contact numbers and where to obtain additional materials. For further information, consult the following website: http://www.ldac-taac.ca/english/projects/screen.htm Statistics Canada and Human Resources Development Canada(December 2003) Report on the Price Survey of Assistive Devices and Supports for Persons with Disabilities This report summarizes the results of a pilot survey of the price of assistive devices and supports for persons with disabilities undertaken in the fall of 2001. It provides a broad sample of over 150 prices of various aids, devices and supports commonly needed by persons with disabilities. The ultimate goal of this work is to create an objective and comprehensive national source of information about the costs faced by persons with disabilities, their families and health and social service organizations. In this way, the price survey is meant to contribute to the development of a more accurate and comprehensive portrait of the costs borne by individuals with disabilities, and should assist in the work of researchers, policy makers, service providers and advocates. For additional information on the report,consult the following website: dsp-psd.communication.gc.ca/Collection/RH63- 1-585-11-03E.pdf SDPP Research in Progress Neil Squire Foundation (2004-2005) Aging Employees with Mobility Impairments: Changing Behaviours to Solve Workplace Accommodation Objectives This project will replicate and expand upon the important work done at the Rancho Los Amigos National Rehabilitation Center in Southern California on the work problems and accommodations of older workers with spinal cord injury and postpolio (1999). Using the Rancho study instruments, the group will adapt the project to include more disability groups (and employers) and original items to create psychologically sensitive intervention strategies (see below). It will also provide workplace accommodation information that is relevant to the Canadian service delivery and policy context. The second significant component of this project is based on a respected health promotion model (Prochaska’s “readiness to engage in change” model, 1982–present) to create a “Stages of Change Tool” for older workers with disabilities (SCT-OWD). This tool will classify the “psychological readiness” of older workers with disabilities to pursue optimal workplace outcomes and suggest the most appropriate workplace accommodation intervention strategies for this vulnerable employee population. The Roeher Institute (2003-2005) Building Knowledge Networks in Disability and Employment Objectives The main objective of this project is to map and expand networks of people, organizations, and knowledge concerning disability and employment. To facilitate this mapping and expansion, a grid will be created that allows knowledge resources and gaps in knowledge to be pinpointed. Over time, partnerships will be formed as stakeholders are identified who hold particular types of knowledge. As gaps in knowledge become evident, stakeholders will have a basis for pursuing new avenues of research and for developing theories and practical resources to improve the employment situation of people with disabilities. The Roeher Institute (2003-2005) Strengthening a Canadian Research Network on Disability and Inclusion Indicators Objectives a. To establish a trans-disciplinary Canadian research network for indicator development, data access and coordination, research review, and research reporting on disability, public and private sector policy, and inclusion. b. To establish an on-line information library and portal for access by the disability community, governments, and the general public to research findings and indicators on disability, policy, and inclusion. c. To promote the development of young researchers in the fields of disability, public policy, and inclusion who can help to build and sustain a dynamic research network in Canada. Developing such capacity is necessary with the increasing proportion of Canadians with disabilities and the growing complexity and scale of policy issues in the public and private sectors. Upcoming Events Sept. 8-10, 2004 Disabled Peoples’ International World Summit 2004: Diversity Within DPI’s World Summit will be an opportunity for national assemblies, disability organizations, NGOs, international development agencies, as well as goods and services providers in the disability field to discuss and share information. The purpose of the Summit is to pursue the issues agreed upon at the DPI 6th World Assembly in Sapporo, Japan, to address the issue of diversity, and to prepare for the next World Assembly in South Africa in 2006. The theme for the Summit will be diversity of people and their cultures and will focus on women, youth, and Indigenous peoples. www.dpi.org/ Location: Winnipeg, Manitoba Email: summit@dpi.org October 5-6, 2004 PAHO/WHO Conference on Intellectual Disability This conference is organized in collaboration with the Pan American Health Organization (PAHO), the World Health Organization (WHO), Lisette-Dupras Rehabilitation Centre and West-Montreal Rehabilitation Centre. The Conference aims at bringing together experts on intellectual disability, as well as government and community representatives to refl ect on specific rights for persons with intellectual disability that should be refl ected in the text of the United Nation’s International Convention to promote and protect the rights and dignity of persons with disabilities. Another objective of the conference is to bring participants to identify innovative best practices in the development and implementation of disability policy, programs and services which target persons with intellectual disabilities. www.conferencemontreal2004paho-who.com Location: Montreal, Québec Featured Web sites Statistics Canada (PALS data): The 2001 Participation and Activity Limitation Survey (PALS) is a postcensal survey of adults and children whose everyday activities are limited because of a condition or health problem. www.statcan.ca/english/IPS/Data/89- 578-XIE.htm Canadian Council on Social Development – Disability Research Information Page: CCSD is a non-profit social policy and research organization focusing on issues such as poverty, social inclusion, disability, cultural diversity, child well-being, employment and housing. www.ccsd.ca/drip/links.htm NIDMAR (National Institute on Disability Management and Research): NIDMAR is an internationally recognized organization committed to reducing the human, social and economic costs of disability. As an education, training and research organization, NIDMAR’s primary focus is the implementation of workplacebased reintegration programs. www.nidmar.ca National Centre for the Dissemination of Disability Research: NCDDR performs research, technical assistance and demonstration activities focusing on the dissemination and utilization of disability research funded by the National Institute on Disability and Rehabilitation Research (NIDRR). www.ncddr.org