<c . ”>■ A P rofile of Albertans with Disabilities: a C ompilation of Information from National Data Sources Office for Disability Issues Alberta Seniors and Community Supports Government of Alberta September 2006 /dlbcrla Seniors and Community Supports A P rofile of Albertans with Disabilities 1 A P rofile of Albertans with Disabilities For more copies or information contact: Office for Disability Issues Alberta Seniors and Community Supports Suite 1110, HSBC Building 10055- 106 St. Edmonton Alberta T5J 2Y2 Ph 1-800-272-8841 fax (780) 415-0097 Office for Disability Issues A P rofile of Albertans with Disabilities 2 Table of Contents Executive Summary 3 A H istory of Disability Statistics Early Beginnings 5 Major Developments 5 Changing Approaches 6 Looking Ahead 7 A C urrent Canadian Profile In Focus: Alberta's Current Profile 10 Comparison with Canada and Other Provinces 20 International Comparisons Background 31 National Profiles Australia 32 New Zealand 33 United Kingdom 35 United States 37 Discussion on Disability prevalence trends 39 Appendices 41 Appendix A: Number of Disabilities Experienced, by Age 42 Appendix B: Canadian Profile, by Age Group 43 Appendix C: Congenital Anomalies 53 Appendix D: Prevalence of Disabilities by Type, Canada and Provinces ....54 Appendix E: Resource List 55 List of Tables & G raphs. 60 Office for Disability Issues A P rofile of Albertans with Disabilities 3 Executive Summary Over the past 25 years, a variety of disability-related data has been gathered in Canada and abroad. This information has become an important asset for developing and implementing government and non-government initiatives that help persons with disabilities. A P rofile of Albertans with Disabilities gathers existing information on persons with disabilities living in our province, with a f ocus on those who are 15 years and older. This report provides an overview of disability demographic research and serves as a resource where readers can find descriptive information, such as the average total income for an Alberta woman with disabilities, or how Alberta compares to Canada or the other provinces in terms of disability prevalence. Some highlights: • Nearly 15% of Albertans aged 15 and over report having one or more disabilities. This is the third lowest rate among the provinces, and is close to the national prevalence. Most have disabilities that are mild to moderate in severity. • The three most common disabilities affecting Albertans are related to pain, mobility, and agility. • Seniors, especially older seniors, are by far the age group most affected by disabilities. This is consistent across Canada and in other countries as well. • A m ajority of children, youth, adults, and seniors with disabilities experience more than one disability at a t ime. • Many persons with disabilities live in poverty, or are at risk for living in poverty. • Females with disabilities are more likely to live in poverty than are males with disabilities, or males and females without disabilities. This can be linked with the fact that on average, females with disabilities experience lower education levels, higher levels of unemployment, and a l ower total income. • Over half (55.6%) of Albertans with disabilities aged 15 to 64 are active in the labour force (actively seeking employment or are employed). • More than half (52%) of Albertans with disabilities aged 15 to 64 are employed. In comparison, 79.3% of Albertans aged 15 to 64 without disabilities are employed, a d ifference of 27%. • Albertans with disabilities have the second highest employment rate across the provinces, and have the highest average total income. Office for Disability Issues A P rofile of Albertans with Disabilities 4 Beyond the provincial and national data, this report also presents the disability prevalence rates of four comparable countries: Australia, New Zealand, the United Kingdom, and the United States. These profiles serve as a backdrop to a discussion on future trends in disability prevalence. International discussions on whether disability prevalence is increasing or decreasing are summarized to provide an understanding of why entities such as the World Health Organization predict an increase in disability. Office for Disability Issues A P rofile of Albertans with Disabilities 5 A H istory of Disability Statistics Early Beginnings For more than 200 years, Canadians have addressed the needs of persons with disabilities. Community-based organizations have responded by providing housing and basic care to those considered most in need, such as those with developmental disabilities or mental health concerns. With time, many responsibilities for creating, funding, and administering disability-related services became the work of government. For the most part, development of services for persons with disabilities was sporadic, rather than a result of careful long-term planning. Additionally, a shared interest in collecting information on persons with disabilities was lacking. This absence of data gathering was not unique to Alberta or Canada. Though some charity organizations may have collected records, a concerted and government-led effort did not emerge in Canada or the rest of the world until late in the 20th century1. Maior Developments As disability rights gained more attention around the world, disability policy became an increased priority on both national and international government agendas. This, in turn, created a need for information to assist in developing strategies to realize full inclusion2. The need stemmed from the recognition that creating profiles of people with disabilities could assist governments in assessing needs, identifying target populations, and developing tailored initiatives. By the 1970s, Canada had developed the essential policy elements necessary for government-directed change, and Canadian disability rights came to the forefront between 1979 and 19813. A c limactic milestone was the United Nations' declaration of 1981 as the "International Year of Disabled Persons." 1 E nns, H. & N eufeldt, A.H. (Ed), In Pursuit of Equal Participation: Canada and disability at home and abroad. 2002 2 U nited Nations Department of Economic and Social Affairs Statistics Division, Demographic and Social Statistics Branch, Briefing note on the collection and dissemination of disability statistics, 2004 3 E nns, H. & N eufeldt, A.H. (Ed), In Pursuit of Equal Participation: Canada and disability at home and abroad. 2002 Office for Disability Issues A P rofile of Albertans with Disabilities 6 Also in 1981, Canada's Special Parliamentary Committee on the Disabled and Handicapped published a report recommending that the federal government develop a l ong-term system to capture information on Canadians with disabilities. As an initial response to the committee's suggestions, the Canadian Health and Disabilities Survey was carried out in 1983/844. As a f ollow up to the survey, Canada began its first post-censal survey specifically designed to gather disability data in 1986. This survey was named the Health and Activity Limitation Survey (HALS) and set a national precedent for the creation of an in-depth disability profile. HALS survey respondents were identified using filter questions in the federal census; collectors Post-censal survey: A p ost-censal survey is followed up with households with any children a survey that uses a census question to or adults that responded positively to census identify the target population. It is usually filter questions. This group then became the conducted shortly after a census, with census sample population for HALS. staff and field infrastructure being used to select the sample and collect the data. Armed with new knowledge gathered in this (Statistics Canada: survey, federal and provincial governments www.statcan.ca/english/freepub/92-125- GIE/html/pos.htm) now had the capacity to plan based on some initial evidence, rather than on the assumed needs of persons with disabilities. A further consequence of collecting and openly sharing HALS data was that the realities faced by many persons with disabilities, such as poverty, came into stark clarity and helped to rouse public support for disability rights5. Changing Approaches In 1991, HALS was repeated using the same definition of disability used in the 1986 survey. That definition asked respondents to note whether they experienced restrictions in their "ability to perform an activity in the manner or within the range considered normal for a h uman being"6. This definition was based on the premise that rather than categorizing themselves with precise labels, persons with disabilities should be able to self-describe the particular limitations they experienced7. While HALS 1986 and 1991 took a l arge step towards capturing disability data, it still needed to be improved. Specifically, the data demonstrated the need to refine census filter questions, disability definitions, and survey tools. The need for modifications was also based on the growing body of international disability research and social planning. 4 P ublic Health Agency of Canada, Ora Kendall, Tammy Lipskie and Shauna MacEachern, " Canadian Health Surveys, 1950- 1997" CXwqwc Diseases in Canada Vol. 18, No.2., 1997 5 E nns, H. & N eufeldt, A.H. (Ed), In Pursuit of Equal Participation: Canada and disability at home and abroad. 2002 76 pI .b id 1 1, Ibid Office for Disability Issues A P rofile of Albertans with Disabilities 7 Bodies such as the United Nations (UN) and World Health Organization (WHO) had begun reassessing whether disability definitions and statistics collection methods being used across the globe were accurate and effective. Their conclusion was that existing definitions of disability needed to change. New definitions had to reflect nuances in limitations, rather than simple categorization that reinforced a view of disability as individual pathology. The UN Statistical Commission established international disability statistics collection standards in 1994 by creating the Fundamental Principles of Official Statistic s8. These principles were widely referenced in international agreements, and they focused on ensuring the rights of persons with disabilities. They included standards for how disability statistics would be gathered, analyzed, distributed, and used. A n ew definition of disability was published by the World Health Organization (WHO) in 2001, and is known as the International Classification of Functioning, Disability and Health (ICF). The ICF describes, "changes in body function and structure, what a person with a h ealth condition can do in a standard environment (their level of capacity), as well as what they actually do in their usual environment (their level of performance)"9. The ICF framework is multifaceted and is intended for use in a b road array of clinical, research, and policy settings. In contrast to earlier definitions, it emphasizes that people universally experience varying levels of health. This definition aims to reduce the stigma associated with disabilities, normalize the presence of disabilities, and present disabilities in an increasingly respectful way. In 2001, WHO Member States agreed to use the classification for disability- related work to begin standardizing data collection. Looking Ahead In 2001, the UN took a f urther step towards refining disability data collection by organizing the Washington Group on Disability Statistics. The group's purpose is, "the promotion and coordination of international cooperation in the area of health statistics by focusing on disability measures suitable for censuses and national surveys which will provide basic necessary information on disability throughout the world"10. 8 U nited Nations Department of Economic and Social Affairs Statistics Division, Demographic and Social Statistics Branch, Briefing note on the collection and dissemination of disability statistics, 2004 9 p . 2, World Health Organization, Towards A C ommon Language for Functioning, Disability and Health: ICF, 2002 10 U nited Nations Statistics Division, Washington Group On Disability Statistics, http://unstats.un.org/unsd/methods/citygroup/washington.htm Office for Disability Issues A P rofile of Albertans with Disabilities 8 Canadian representatives have participated in all four of the Washington Group meetings that have taken place, and this has undoubtedly contributed to Canada's approach to data collection11. Two main priorities guide the group's work: the creation of general disability measures that can be used in broad national surveys (such as a national census), and the creation of extended sets of survey items that can be used to measure disability in specialized population surveys (such as HALS). All of the measures and sets produced by the Washington Group will be based on the ICF framework, and once completed, will be publicly available. In addition to the Washington Group's efforts, the UN began to systematically collect disability information in 2005 through its Demographic Yearbook data collection system. Information will be collected annually from national statistics offices12. Collaboration between the UN, WHO, and national governments has laid the groundwork for respectful, precise, and comparable disability data— information useful to international bodies and state governments. For Canada, shifting international practices meant changes in Statistics Canada's definitions of disability and survey methodology. Equipped with new standards of practice, the federal government prepared to carry out its third post-censal survey on disability in 2001. However, the implementation of these new practices meant that HALS survey tools were no longer usable. In its place, the Participation and Activity Limitation Survey (PALS) was introduced. PALS 2001 was based on the ICF framework and the UN's recommendations. New census filter questions, ability-focused definitions, and survey tools that captured activity limitations and participation restrictions (while acknowledging environmental barriers and facilitators) were key features of the new survey. Separate survey tools were used for children and adults. In total, self-reported data on 35,000 adults and 8,000 children living in individual or shared residences was captured through first hand or proxy interviews (proxies were used for adults with guardians, and children)13. 11 I bid 12 U nited Nations Department of Economic and Social Affairs Statistics Division, Demographic and Social Statistics Branch, Briefing note on the collection and dissemination of disability statistics, 2004 13 E nns & N eufeldt, 2002; Statistics Canada, A P rofile of Disability in Canada 2001; Statistics Canada, Measuring Disability: Results from the 2001 Census and the 2001 Post-Censal Disability Survey, 2003 Office for Disability Issues A P rofile of Albertans with Disabilities 9 The PALS 2001 data was released through a series of reports beginning in late 2002. Since then, service organizations, disability advocacy groups, and all levels of government have begun to use it. Unfortunately, due to significant definition and survey tool changes between HALS (1986 and 1999) and PALS 2001, the data is not comparable. This means that neither the Government of Alberta, nor the Government of Canada have been able to accurately track changes in the demographic profile of persons with disabilities14. Plans are currently underway for carrying out PALS in 2006. To ensure that data gathered in 2006 is comparable to 2001 data (and thereby usable for identifying trends), only minimal changes will be made to the census filter questions and survey tools. Some notable changes in the 2006 survey design will be including the three territories and the option for provinces to purchase larger sampling sizes, thereby enabling more in-depth regional analysis15. One of PALS 2006's most important achievements will be the comparability of its data at the provincial, national, and international level. 14 Enns & N eufeldt, 2002; Statistics Canada, A P rofile of Disability in Canada 2001 15 S tatistics Canada, Federal Provincial Territorial Working Group on Benefits and Services for Persons with Disabilities, December 7, 2004 Office for Disability Issues