The Economic, Social, and Environmental Obstacles Which Seniors with disabilities confront in Canada

PETER A. DUNN, Wilfrid Laurier University
(Reprinted from Canadian Journal of Community Mental Health, Vol. 9, No. 2, Fall 1990.)

ABSTRACT

This paper presents data about the demographics of disabled seniors in Canada and the range of economic, social, and environmental barriers which they confront. Issues are highlighted connected with the independent living paradigm, marginalization, and the multiple social problems of being elderly, disabled, female, and/or a member of a visible minority. The author then describes the implications for future action research, theory development, policy formulation, and social change.

This research uses data from the author's report for Statistics Canada and the microdata tape HALS.15+. HHLD which contains anonymized data collected in 1986 by the Health Activity Limitation Survey (Statistics Canada, 1988). All computations of these microdats were prepared by Peter A. Dunn and the responsibility for the use and interpretation of these data is entirely that of the author.

INTRODUCTION

Approximate:y 46% of people aged 65 or older have a physical, developmental, or mental disability according to Statistics Canada's (1988) Health Activity and Limitation Survey (HALS). This sample survey was conducted in 1986-87 to ascertain the barriers confronting disabled people in Canada. In addition, the percentage of seniors who have a disability rapidly increases with age, so that by the age of 85, roughly 82%9 of Canadian seniors are disabled.

Despite the fact that seniors represent approximately 37% of all people with disabilities in Canada, and have a much higher disability rate than the population as a whole (Statistics Canada, 1988), their concerns are often overlooked. For example, not one of the 12 disabled people profiled in the Canadian government's report, Obstacles (Special Parliamentary Committee on the Disabled and Handicapped, 1981), was a senior. The independent living movement which has been led by people with disabilities in Canada and the United States has focused primarily upon the issues of children and adults under 65 years old (Crewe & Zola, 1984). Even the research on the issues of disabled seniors is very limited (McDonald, Badry, & Mueller, 1988). Nevertheless, there is growing recognition of the wide range of barriers, including inaccessible housing and transportation or inadequate community services, which keep many seniors from full participation in Canadian life (Marshall, 1980; McPherson, 1983).

This paper describes and analyzes the barriers which confront disabled seniors in Canada, especially those individuals with physical disabilities. For the purposes of this paper, barriers are defined according to the independent living movement as economic, environmental and attitudinal factors, including inadequate services and resources, which limit individuals' full participation in society. The author draws upon the compilation of the results from the 1986 HALS survey which he undertook for Statistics Canada and then provides an analysis of the implications for program and policy development. HALS compiled information about the incidence of disability in Canada and the extent of the barriers confronting disabled people in relation to housing, social services, income, employment, education, transportation, recreation, and leisure. Although the data are primarily descriptive in nature, this information can be useful for planning, policy formulation, lobbying, and developing research initiatives.

The analysis of these data is based upon the independent living (IL) paradigm which DeJong (1981) operationalized and applied to people with physical disabilities. This paradigm was formulated as a result of the grassroots movements in the 1960s and 1970s and the efforts to influence legislation in the field of rehabilitation (DeJong & Lifchez, 1983; Scotch, 1984). The IL paradigm calls for a renunciation of the medical and rehabilitation models which focus on the limitations of the individual and his or her inadequate performance of daily living tasks. In the traditional model, the individual assumes the role of patient or client and complies with the advice of a physician or therapist in order to become better adjusted to his or her disability. The IL paradigm offers an alternative analysis of the issues of disability and of their solutions. The paradigm emphasizes that the issues are not only personal physical limitations, but also pathology found in the environment, in unprotected rights, and in overdependency upon relatives and professionals. The solutions which will enable disabled people to live in the community and lead productive lives can be achieved through self-help, advocacy, and the removal of economic, social, and environmental barriers (Crewe & Zola, 1984; DeJong, 1981; DeLoach, 1983; Frieden, 1981).

According to DeJong (1981), the research literature which deals with people with physical disabilities initially disregarded the environmental factors deemed significant by the IL movement. The paradigm used by rehabilitation and medical researchers tends to focus on disabled individuals in terms of psychological adjustment, motivation and cooperation, hospital environment, and family support. It has only been very recently that researchers have investigated the impact and extent of barriers which limit the choices of people with disabilities (DeJong, 1981; Dunn, 1987; Ratzka, 1984).

According to McDonald, Badry, and Mueller (1988), the research literature which deals with the issues of disabled seniors is still quite limited. The research often focuses upon whether disabled seniors are similar in characteristics to those who are not handicapped and whether they have needs for special services. Researchers are beginning to assess some of the concerns of seniors with a range of disabilities, including individuals with mobility limitations (Cook, 1979; Housman & Baumann, 1981; Young, Goughler, & Larson, 1986), visual impairments (Gillman, Simmel, & Simon, 1986; Hill & Harley, 1984) and hearing impairments (Patterson & Berry, 1987), the growing number of developmentally disabled seniors (Cotton, Sison, & Starr, 1981; DiGiovanni, 1978; Sweeney & Wilson, 1979), and individuals with mental-health problems (Gerson, Jorjoura, & McCord, 1987; Wasson et al., 1984).

One of the major gaps in the research is an assessment of the obstacles which confront disabled seniors across Canada. However, Statistics Canada has recently begun to collect and develop comprehensive databases in this field of research. During the International Year of the Disabled in 1980, the federal government established the Special Parliamentary Committee on the Disabled and Handicapped to investigate the needs of disabled persons in Canada and to report to the House of Commons. In their report, Obstacles (1981), the committee recommended that Statistics Canada create a national database focusing on the nature and severity of disabilities and the needs of disabled Canadians. Statistics Canada began this research with the Canadian Health and Disability Survey which was administered as a supplement to the Labour Force Surveys in October, 1983 and June, 1984. This survey of 19,240 disabled adults and children documents the economic, social, and environmental barriers confronting people with disabilities in the community. In 1986, Statistics Canada added a question on activity limitations in the Census of Population which identified the sampling frame for HALS.

Then, in 1986-87, Statistics Canada undertook the follow-up HALS survey. This survey: (a) expanded the definition of disability to include mental health and learning disabilities as well as mobility, agility, hearing, and visual handicaps; (b) enlarged the sample to include disabled people residing in the Yukon, Northwest Territories, on Indian reserves, and in institutions; and (c) collected more extensive data on a much larger sample in order to release data for sub-provincial areas or for disabilities of low incidence. As a result, HALS is one of the most comprehensive and in-depth national surveys of this kind.

METHODS

HALS was composed of two surveys: a survey of 102,320 disabled people in the community and a survey of 18,200 individuals with disabilities living in institutions. The sample design of the household survey was a multi-stage stratified sample utilizing demographic data from the 1986 census. For the institutional survey, a stratified sample of five types of facilities was selected based upon the institutions listed in the 1986 census, including orphanages and children's homes, special-care homes and facilities for the elderly, general hospitals, psychiatric institutions and treatment centres, and facilities for the physically handicapped. A sample of residents was chosen within each selected institution (Statistics Canada, 1987).

For the purposes of HALS, disability was defined primarily using the World Health Organization's functional concept of activities of daily living. Adult respondents were considered disabled if they stated they had trouble undertaking by themselves one or more of 17 activities of daily living or if they experienced a limitation in the kind or amount of activity which they could do at home, work, or school because of a physical condition, health problem, or mental handicap. Children under 15 years of age were classified as disabled if they were physically limited or prevented from participating in school, play, or other activities normal for children of their age, had a chronic health problem, or required technical aids. People who had disabilities which were expected to last for less than six months or whose handicaps would be totally eliminated by technical aids were not considered disabled (Statistics Canada, 1987).

HALS had a number of limitations. It was a sample survey which provided estimates at the provincial level and for some sub-provincial areas including large municipalities. Data are not available for specific small towns or subsections of large cities. Despite the large number of respondents, multiple crosstabulations may lead to very small and statistically unreliable cell sizes, especially for analysis of issues related to people in institutions. The individuals in institutions were asked far fewer questions about their needs than people living in the community. The survey was based upon self-assessments, so that complex and hard-to-diagnose conditions such as Alzheimer's Disease and Dementia may have been under reported by people living in the community. Finally, defining who is disabled is somewhat subjective. The estimate of the total number of disabled people in Canada depends upon the way in which the term disability is defined and operational ized. Statistics Canada dealt with this methodological problem by using a normative standard. They adopted the World Health Organization's definition and classification system which has become the international standard for determining disability.

Respondents and community groups had input into this research. Statistics Canada asked the Advocacy Resource Centre for the Handicapped (ARCH) in 1985 to organize a consultative conference of consumer groups, service agencies, and academics from across the country. This conference and subsequent consultation provided specific recommendations for the definition of disability, the content and process of the survey, and the dissemination of the results. In addition to ARCH, the Coalition of Provincial Organizations of the Handicapped (COPOH) conducted a workshop on how the data should be presented for use by organizations of and for disabled people. One Voice, the Canadian seniors' network, conducted a similar consultation with seniors' groups.

RESULTS

Because the HALS questionnaire collected an extensive amount of data about every respondent, there are many approaches for analyzing and presenting this information. This discussion will focus upon some of the key characteristics of seniors who are disabled in Canada, the areas in which barriers are most prevalent, and the major accomplishments of community service programs. Because of the limitations of the survey instrument, individuals with mental health and developmental disabilities were categorized as "other" by Statistics Canada. Therefore, the data on people with mental health and developmental disabilities are not examined separately.

Characteristics of Seniors with Disabilities

The proportion of disabled seniors. Table I shows that over one-third of all disabled people in Canada are seniors. The percentage of seniors increases dramatically with age from 37.6% for individuals aged 65-74, to 53.6% for age 75-84, and 82.1 % for seniors aged 85 and older.

The provincial distribution. Table 2 indicates that the percentage of seniors with disabilities varies across Canada. The Atlantic provinces (Newfoundland, P.E.I., Nova Scotia, and New Brunswick) have the highest percentages of disabled seniors of all the provinces. However, the Yukon and the Northwest Territories have even higher disability rates.

The nature of disability. Table 3 illustrates that by far the greatest number of disabled seniors has a disability related to mobility or agility and that individuals in institutions have more disabilities, especially related to speaking, vision, and "other." It is important to stress that individuals can have more than one disability. Not only does the incidence of disability increase with age, but also older seniors are more likely to have multiple disabilities and more severe disabilities. For example, approximately 20010 of the individuals in the community between the ages of 65 and 74 have disabilities classified as severe, according to a scale which Statistics Canada developed based upon total or partial loss of functional activities, compared with 30% of the individuals from 75-84 years old and 49010 of people age 85 or older.

Community vs. institutions. Table 4 shows that the rate of institutionalization increases dramatically with age. Interestingly, the average number of disabled individuals who live in institutions is much greater in the provinces from Quebec west to British Columbia at 17%, than the four Atlantic provinces which average 10%, and the Yukon and Northwest Territories with an average of 5.5%. The survey did not explain the reasons for different rates of institutionalization. The largest number of institutionalized seniors in Canada are in special-care homes and institutions for the elderly (89%), followed by general hospitals (8%), psychiatric facilities (2.5%), and treatment centres (.5%).

TABLE 1
Percentage of People with Disabilities In Canada, 1986 and 1987, in the Community and in Institutions

TABLE 2
Percentage of Seniors (65+) with Disabilities in the Community and in Institutions

TABLE 3
Disabled Seniors (65+) in the Community and in Institutions by Nature of Disability

Note: Individuals may have more than one disability, so these figures total more than 100%. There are 25,465 or 3% of people with unknown disabilities in the community and 510 or .2% in institutions.

TABLE 4
Disabled Persons (65+) in the Community and in Institutions by Sex and Age Group

Gender. Table 4 indicates that approximately 60% of the seniors with disabilities in Canada are women and 4001* are men. Not only is there a greater percentage of women than men who are disabled, but their rate of institutionalization is higher, 19% for women compared with 1140 for men. A much larger proportion of disabled males in the community are married than their female counterparts: 76010 compared with 35%. Plus, a greater proportion of disabled seniors who are women are widowed than men; 56% versus 13%.

Place of birth and race. By far the largest percentage of seniors with disabilities were born in Canada (73%), followed by the British Isles (10%), Western Europe (6%), Eastern Europe (4%), the United States (3%), and the U.S.S.R. including the Ukraine (2%). Approximately 55,510 individuals, or 5.4% of the disabled seniors who live in the community, are members of visible minority groups. Roughly 70% of these are women.

TABLE 5
Needs of Disabled Seniors (65+) Living in the Community in Canada

(N= 1,026,915)

(1). Total number of individuals needing these items or affected by the issue. A total of 1,026,915 disabled seniors live in the community in Canada.
(2). These calculations are based upon the percentage of the total that still do not have these items. The number still in need of each item can be calculated by multiplying column 1 by column 2.
(3) Excludes individuals residing in collective dwellings or on Indian reserves.
(4) Total number able to travel.

Barriers to Independence

Table 5 outlines some of the barriers (i.e., the inadequate services and resources) which seniors with disabilities face when they live in the community. These calculations indicate the percentage of people who still need these services as a percentage of those individuals who have or require them (i.e., outstanding need). Data about disabled seniors in institutions are not provided because little of this information was collected by Statistics Canada.

Income. One of the major problems facing seniors in Canada is the fact that a large number are poor. Approximately 60% of disabled seniors have incomes under $10,000 compared with 51% for non-disabled seniors. Many disabled seniors are confronted with additional out-of-pocket expenditures which are not reimbursed by any insurance or government programs. For example, approximately 21% are not reimbursed for prescription drugs, 9% for transportation, and 8% for special supplies.

Income, gender, and race. Not only are the majority of disabled seniors poor, but there are significant inequalities of income based upon sex and race. Approximately 67% of disabled females have individual incomes under $10,000 per year compared with 38% of males. Almost all disabled seniors who are members of visible minorities make under $20,000 per year and 81% made under $10,000. Roughly 92% of visible minorities who are female make less than $10,000 per year.

Housing affordability. Approximately 39% of disabled seniors who are tenants pay more than 30016 of their incomes on rent compared with only 10076 of homeowners who pay this percentage of their incomes on mortgage payments. Many seniors may have paid off their mortgages for their homes before they retired. They are often considered relatively resource rich and income poor. Aproximately 66% of seniors with disabilities are homeowners.

Education. Approximately 52% of disabled seniors had less than a grade 9 education compared with 43% of non-disabled seniors. Unfortunately, information was not collected about the specific barriers which older adults faced in obtaining further education or upgrading. However, only four percent of disabled seniors indicated they were participating in courses or seminars at least once per month.

Leisure activities. The vast majority of seniors with disabilities participate in leisure activities. Approximately 85% visit friends once per month, 47% to shopping, 20% attend sporting events, 18% visit museums, and 15% go to provincial or national parks. However, 25% of the disabled seniors who wish to participate in more of these activities have problems because of the costs, transportation, and inadequate facilities.

Recreation. Many disabled seniors are involved in recreation. Approximately 41% participate at least once per month and 66010 of the individuals who participate in recreation do so at least three or more times per week. However, 23% of seniors who wish to participate in more recreation encounter barriers such as problems with the costs of programs, inadequate transportation arrangements, and/or unsuitable programs and facilities.

Aids for mobility, bearing, and vision. Approximately 20,540 (8%) of the people who need mobility aids, such as wheelchairs and walkers, do not have them; 81,800 (31%) still need hearing devices; and 23,085 (10%) still need aids for vision. The main barrier to obtaining these items is their cost.

Housing adaptations. Approximately 63,030 (33%) of the 191,000 individuals who need special housing features do not have them. The greatest number of housing adaptations which are still required is 36,830 handrails or grab bars which are vital for use in places such as showers and stairways. These items are relatively inexpensive; however, the next most frequently cited items were more expensive adaptations, including 16,500 ramps, 9,350 accessible entrances, and 5,220 lifts or elevators.

Community services. Table 5 indicates that a high percentage of the people who need community supports and services such as help with meals, shopping, housework, chores, finances, and personal care, do not have these services or require additional support. In addition, the level of independence of disabled seniors decreases significantly with age. Family members provide most of the supports. For example, families undertake roughly 68% of the help required in preparing meals for dependent seniors, agencies deliver 26% of this care, while neighbours and friends offer about 6%. Individuals can receive services from one or more of these resources.

Local transportation. About 37% of seniors with disabilities in Canada indicated that local public transportation, such as buses or subways, were not available in their communities. Another 36% seldom used their local transit for a number of reasons such as problems getting on and off the vehicle. Approximately 83,240 (8%) of all disabled seniors indicated they required specialized van services because they had difficulty using regular transportation. Roughly 30% of the people who require this service could not obtain it.

Long distance transportation. There were 788,825 disabled seniors who were able to travel long distances (80 km or more) in Canada. However 50,895 (6%) encountered difficulties with buses, 41,265 (5%) with trains, and 46,345 (6%) with airplanes. These difficulties included boarding and disembarking, moving around in the terminal, hearing announcements, and seeing schedules.

DISCUSSION

The results from the 1986 Health and Activity Limitation Survey (Statistics Canada, 1988) indicate that a large number of disabled seniors in Canada live fairly active lives in the community. For example, 88% undertake their own personal care and 81% do their own shopping. However, almost one half of all seniors have some form of disability and their rate of dependency and institutionalization rapidly increases with age. Seniors are almost nine times more likely to be disabled than children or younger adults. The data in this paper clearly indicate the importance of developing comprehensive policies to deal with the numerous barriers which confront disabled seniors. Research reveals that barriers have a major impact on the independence of people with disabilities (Dunn, 1987). The need for long-term planning is particularly acute because the percentage of seniors in Canada may triple by the year 2031 and seniors are living longer and therefore are more prone to becoming disabled (McDaniel, 1986).

Many disabled seniors are marginalized in Canada in terms of income and active participation in society. Many are excluded because they do not have enough money to purchase basic necessities and services, or they cannot participate because of inaccessible environments. Individuals who do not receive the necessary supports may encounter serious problems which may lead to their withdrawal from active participation in society and perhaps result in early and unnecessary institutionalization. Some groups are particularly vulnerable including women, minorities, and older seniors. Disabled women are much more likely to be widowed, poor, living alone in the community, or residing in institutions than are men. McPherson (1983) emphasizes the problem of multiple jeopardy. Elderly persons may have devalued statuses, positions, or opportunities because of societal attitudes and institutional practices related to two or more demographic characteristics. The HALS data appear to support this concept. Seniors who are disabled, women, and members of racial minorities are particularly likely to be poor. These risk factors tend to reinforce each other, but further analysis of the data is required to isolate the impact of each of these demographic characteristics upon income.

The HALS, data indicate that many of the needs of disabled seniors who live in the community are being met by existing services with active help from family members and friends. There is a relatively small percentage of all disabled seniors in Canada who still need these services. There are, however, some major exceptions. Roughly 60% of all disabled seniors have incomes under $10,000, 52% have less than a grade 9 education, and many people still require community services. Nevertheless, a great deal has been accomplished. The needs are manageable and, with more comprehensive policies, they can be significantly reduced.

Further computer analysis of the HALS data can be helpful in developing policies and promoting social change. Government organizations and community groups can determine the extent of the barriers which confront specific groups of disabled people across Canada. With this information, lobby groups can be far more effective and convincing in advocating for social change. Government organizations can determine where to place their priorities and ascertain the effectiveness of their programs for policy makers. It would be beneficial if HALS data could be collected every five or 10 years to determine the trends in the needs and services for people with disabilities. Future surveys should pay particular attention to determining the needs of people with mental-health problems and developmental disabilities. Nevertheless, quantitative research is limited in helping to understand how disabled seniors perceive their complex reality. Qualitative field work, which is directed by consumers, would also be useful in assessing how disabled seniors believe they are affected by attitudinal, social, and environmental barriers in the community and in institutions and in determining their recommendations for change.

Policies must be developed to eradicate the barriers to independent living which disabled seniors face in Canada. These policies must ensure adequate financial resources, accessible environments, and comprehensive community services. These policies should emphasize individual abilities and concepts of empowerment. Policies must allow individuals to remain in the community and enable them to participate in community activities, including undertaking further education, training, recreation, and leisure pursuits.

One of the most pervasive issues which must be addressed in the 1990s is the fact that 60% of disabled seniors in Canada have incomes below $10,000, which severely restricts their independence. Many seniors are poor because of inadequate pensions. However, disabled seniors may have been further disadvantaged because they have been kept out of the workforce because of their disability prior to retirement and must depend upon Old Age Security, Guaranteed Income Supplement, or limited wage-related benefits from Canada or Quebec Pensions. In addition, 60% of disabled seniors are women. McDaniel (1986) points out that many women are ineligible for certain pensions, may receive smaller pensions than men, and have been in an economically disadvantaged position throughout their lives. Some of the solutions, she suggests, are to establish higher rates of Guaranteed Income Supplement, to create homemakers' pensions, and/or to improve survivors' benefits. Another policy option is to develop an adequate and comprehensive national disability insurance program, although this approach may lead to disparaties of income between disabled and able-bodied seniors with similar needs.

Another policy priority area is housing, particularly for the 127,750 tenants who pay more than 30°10 of their income on rent. Policy options may include creating more affordable rental or cooperative housing which is controlled by the residents andlor providing greater income supplements for seniors. Many homeowners could benefit from more opportunities for home-equity conversions, so they can convert some of the equity in their houses into either cash or mortgage payments. Policy alternatives must also be formulated which would help the 33% of disabled seniors who need their homes adapted in order to be more independent. This goal might be accomplished by developing a housing rights bill similar to the recent U.S. Fair Housing Act, expanding Canada Mortgage and Housing Corporation housing and rehabilitation programs to adequately cover the needs of all disabled seniors, and revising provincial building codes to promote more accessible housing.

There is a great need for the development of educational opportunities for seniors with disabilities. Many of the 534,790 disabled seniors who do not have a secondary education may wish to pursue further education and training opportunities. In addition, the data indicate that a major priority must be placed upon making educational, recreation, leisure, and transportation facilities accessible both physically and financially. These goals may be accomplished through the development of more responsive services for disabled seniors and perhaps by developing laws which would ensure basic rights to services.

Additional community services must be developed which are responsive to the physical and social-support needs of disabled seniors. Income supports must be formulated to cover basic equipment, such as those needed by 81,800 people who require hearing devices in order to function more independently. Alternatively, the health-care insurance programs need to be expanded to cover the costs of these basic necessities. Finally, more community services must be developed to respond to the large number of people who need more personal care services. An alternative approach to expanding existing services could be to fund disabled seniors directly to hire and direct their own personal care attendants.

CONCLUSIONS

Although there has been considerable progress in addressing the obstacles which disabled seniors face in Canada, there are many critical outstanding needs. There are many resource issues which are inherently political and economic in nature. Making facilities and programs accessible and responsive to disabled people is easier at an early stage, rather than later in their development. However, even making facilities accessible when they are newly constructed can be costly. It is therefore necessary to develop active lobbying efforts in the 1990s to address these resource issues.

In order to bring about social change, coalition building among groups with similar interests may be the most effective strategy. Coalitions can combine the strengths of a number of groups instead of relying on the efforts of a single pressure group. In addition to gaining strength in numbers, coalitions may heighten the perceived importance of a social issue and possibly appeal to the political interests of a greater number of decision makers. Certainly the numerous issues which have been documented in this paper require a substantial effort to ensure that services adequately address the needs of disabled seniors in Canada.

A national coalition might be developed between disability organizations and senior citizen groups. These organizations have considerable potential power in Canada, but they have been hesitant to work together, partially because government programs have often lumped them together and ignored their different needs. Nevertheless, it may be very useful to develop a broad power base of organizations which might target adequate income maintenance and accessible environments as their initial common goals. Later, the needs for more specialized, but comprehensive community services might be targeted. The most powerful, but also the most complex coalition, would be to bring together groups of people with disabilities, seniors, women, and racial minorities around income maintenance issues and then around the more intricate issue of access to comprehensive services. The HALS data can be used for social change by providing concrete evidence of the social and financial issues which are common to these groups. The agenda for the 1990s requires a process of forming powerful coalitions for social change which can help ensure that responsive and comprehensive policies are developed and implemented, so that disabled seniors can participate more fully in Canadian society.

RESUME

Cet article présente des données démographiques à propos des Canadiens âgés qui souffrent d'une incapacité. On y expose 1'étendue des barrières Economiques, sociales, et environnementales auxquelles ces personnes se trouvent confrontées. Les thèmes de la vie autonome, de la marginalisation, et des multiples problèmes sociaux reliées au fait d'etre âgé, d'avoir une incapacité, d'etre une femme et/ou un membre d'une minorité visible sont abordés. L'auteur décrit les implications de ces données pour la recherche action, Its développements théoriques, la formulation des politiques, et le changement social.

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