Government policy innovations and trends in barrier-free housing, accessible transportation and personal supports

In this paper, Peter A. Dunn, Associate Professor in the Faculty of Social Work at Wilfred Laurier University, Canada, outlines some of the provincial and territorial policies in Canada that began to incorporate independent living (IL) principles during the UN Decade of Disabled Persons (1983-1992). It focuses upon three areas: barrier-free housing, accessible transportation and attendant services/ personal supports. Internet publication URL: www.independentliving.org/docs5/dunn1997a.html

Peter A. Dunn, PhD
Associate Professor, Faculty of Social Work, Wilfred Laurier University,
75 University Avenue, West Waterloo, ON., Canada N2L 3C5

Reprinted from: Canadian Journal of Rehabilitation, Volume 10, Number 2, 1997 pp. 113-123. ISSN: 0828-0827.

* This research study was funded by the Social Sciences and Humanities Research Council, Grant #410-91-1681. 1 would like to thank the many individuals who assisted in this research effort and especially: Julie Gallant, Susan Forbes, Bruce Bidgood, Garson Coon, Dan Salhani, Jean Kellogg, Chin Man Lam, Maria Cheung, Kim Calderwood, Marjolaine Limbos, Arthur Lukey, Michele Kovacevic, Gail Kenyon, Dale Taylor, Vic Willi, John Lord and Gary Cameron.

Government policies are beginning to address some of the economic, political and social barriers which make it difficult for individuals with disabilities to live independently in the community. This paper presents part of the results of a study of government policies that support independent living (IL) in Canada during the Decade of Disabled Persons and beyond. The research documents the major problems as well as some of the positive government initiatives that support independent living. This paper focuses upon the innovative government policies which begin to respond to the basic needs of people with disabilities. This information may be helpful in promoting similar efforts elsewhere in Canada

Key Words: Independent Living; Disabilities; Measurement.

CONTENTS

Literature Review
      Methods
      Overview
      Participants
Procedures
Results
      Accessible Housing Policies
      Housing Adaptation Programs
      Barrier-Free Housing Codes
      Accessible Transportation
      Specialized (Parallel) Transit
      Automobile Conversion Programs
      Accessible Buses
      Accessible Trains
      Personal Supports
Discussion and Conclusions
References


 

The United Nations declared 1981 the International Year of Disabled Persons and the beginning of a concerted effort to promote independent living. Subsequently, the United Nations designated 1983-92 as the Decade of Disabled Persons to highlight the importance of responding to the needs of individuals with disabilities around the world. During this decade, organizations in Canada began increasingly to advocate for consumers and to stress the need to eradicate environmental, social and economic barriers which prevent consumers from fully participating in the community. Nevertheless, most individuals who have a disability in Canada still confront a multitude of barriers to living independently (Statistics Canada, 1991). This article outlines some of the provincial and territorial policies in Canada that have begun to incorporate independent living (IL) principles. It focuses upon three areas: barrier-free housing, accessible transportation and attendant services/ personal supports. The information for this paper comes from a national study of disability policies, which gathered information about government achievements in promoting independent living from 1980 to 1992 and beyond. The research also analyzed trends and documented major issues which still need addressing. Such information can be useful for planning services and advocating for changes in service delivery efforts.

LITERATURE REVIEW

The concept of independent living grew from grassroots efforts to influence disability policies (Berkowitz, 1979; Carpenter, 1991; Dejong, 1993; Enns, 1991; Hahn, 1985; Lord 1991). The independent living paradigm offers an alternative analysis of disability issues and their solutions. It emphasizes that pathology can be found in the environment, in unprotected rights and in over-dependency upon relatives and professionals. Self-help, advocacy and the removal of environmental, social, economic and attitudinal barriers will enable disabled people to live in the community and lead productive lives (BOOST, 1980; Crewe & Zola, 1984; DeLoach, 1983; Dunn, 1990a; Frieden, 1981; Neufeldt, 1993; Oliver, 1990; Ratzka, 1986; Walters, 1992). Derksen (1981) points out that the IL concept emphasizes self-determination and the liberation of people with disabilities.

The current study focused upon government policies which promote independent living policies. There has been a growing interest in researching public policy developments in this field. A number of authors have described the development of disability policies in the United States (Berkowitz, 1979; DeLoach, 1983; Dejong, 1993; Hahn, 1985; Percy, 1989; Scotch, 1984; Stone, 1984; World Institute on Disability, 1987). In Canada, one of the earliest and most extensive analysis of barriers confronting people with disabilities was the report Obstacles, undertaken by the Special Parliamentary Committee on the Disabled and the Handicapped (1981). Since then, there have been a number of reports about barriers confronting individuals with disabilities in Canada and relevant government policies including barrier-free housing (Canada Mortgage and Housing Corporation, 1992a; 1992b), accessible transportation (Dunn, 1990b; National Transportation Agency of Canada, 1993) and personal supports (Cruikshank, 1991; Lord, Hutchinson, Farlow, 1988; Torjman, 1990, 1993). However, none of these studies provided an indepth analysis of the overall trends in Canada during the Decade of Disabled Persons unlike the present research which has documented these trends in terms of specific government expenditures, number of consumers receiving services and details of government policies.

The research is based upon the definitions of independent living which the Canadian Association of Independent Living Centres (CAILC) has outlined in its standards stressing the concepts of consumer control, choice and freedom (COPOH, 1986; CAILC, 1991). Woodill and Willi (1992) point out that there are many versions of independent living. For example, some professionals define independent living as allowing individuals to stay in their own homes. This definition differs considerably from McKnight's concept (1989) of consumer control, choice and community struggle. For the purpose of this research, CAILC's concepts were further refined with the assistance from people in the independent living movement into the following concepts for policies: 1) control/self-directed (i.e. consumers should control the design of services, participate in and control the administration of these programs and direct individual services which should be barrier-free); 2) choice/options (i.e. there should be a range of accessible programs and information should be widely disseminated to consumers about these programs); and 3) freedom/ flexibility (i.e. programs should be flexible enough to meet the needs of individuals with any type of disability, and services should be available when, where and to the extent that individuals require them).

METHODS

Overview

The research addressed the following questions: 1) What have the provincial and territorial governments accomplished in promoting independent living in Canada from 1980 to 1992, and what remains to be done? 2) What are the similarities and differences in these government efforts? 3) What economic, political or social factors may account for differential government policy efforts? It also collected information about the role of the federal government and recent trends of policies since 1992. This paper will focus upon answering part of the first question in terms of innovative government policies which promote IL principles.

Housing, transportation and personal supports were selected for this survey because they make up the triumvirate of community services which enable everyone to function within the community (Dejong, 1981; Crewe and Zola, 1984). Limited resources prevented other key areas such as income maintenance, education, employment, recreation and leisure activities from being investigated. The research looked at the provinces and territories, since the BNA Act primarily allocates the responsibility for community services to this level of government.

Participants

Secondary data were collected through questionnaires which were developed and sent to over 200 key government officials identified through directories and lists of government staff and programs as having direct responsibility for disability policies. Often these individuals had to collect data from other staff and from statistical reports.

PROCEDURES

Different questionnaires were developed dealing with barrier-free housing codes, housing adaptation programs, parallel transit, auto conversion programs, accessible buses, accessible trains, and attendant services for people with physical, developmental and mental health disabilities. These questionnaires were pretested on a sample of government officials and revised. These extensive questionnaires collected information about the trends in government expenditures, the number of program participants and the components of government programs. Scales were developed which rated the extent to which these programs included IL principles.

A Research Assistant hired from Quebec translated the questionnaires into French and spoke with officials in Quebec. With extensive telephone follow-up, an 100% return rate was achieved across Canada. Information about the development of specific programs was readily available. However, data about trends in budgets and numbers of consumers receiving services required a lot more follow-up.

In addition, an extensive library of government reports was compiled which dealt with recent developments in Canada. Reports, articles and newsletters from over 300 consumer organizations outlined the perspectives of consumers on government policies in their region.

The quantitative data for this study were analyzed using SPSS Windows. Multiple regression techniques determined the key sociodemographic, economic and political variables. Changes in these programs were graphed over time.

RESULTS

Accessible Housing Policies

The 1867 British North American Act delegated the responsibility for housing to the provinces. This constitutional arrangement, has made it difficult for the federal government to initiate comprehensive barrier-free housing policies across Canada. The federal government's responsibilities are outlined in the National Housing Act (NHA) and implemented by Canada Mortgage and Housing Corporation (CMHC). CMHC has chosen to influence housing through financial mechanisms such as grants, loans and insurance arrangements.

This study examined two areas of government housing policies: government barrier-free building codes and government policies which fund housing adaptation programs to make existing housing barrier-free.

Housing Adaptation Programs

One of the strengths of government initiatives in barrier-free housing in Canada has been the existence of a national housing adaptation program. The federal government's Residential Rehabilitation Assistance Program (RRAP) was developed in 1973 as a general home improvement program for people with low to moderate incomes whose homes needed repairs and who lived in designated neighbourhood improvement areas. In 1981, this program

evolved to included grants and loans for housing adaptations. In 1986, CMHC developed the RRAP-D program for people with disabilities who had low to moderate incomes. This program has provided individuals in need with a maximum of $10,000 in loans, including up to $5,000 in grants depending upon income, to modify their homes. From 1974 to 1990 the RRAP-D program helped renovate approximately 220,000 homes across Canada. In addition, CMHC has implemented the Home Adaptations for Seniors (HASI) program throughout Canada. This two-year demonstration program provided low-income elderly people, 65 years and older, with up to a $2,500 grant to pay for minor housing adaptations (Dunn, 1994). However, both the federal Conservative and then the federal Liberal governments curtailed funding for these programs. HASI has only recently been refunded for a short term, and the RRAP-D program received only very limited funding in 1996-97.

Seven of the provinces and territories have their own specific housing adaptation programs, and ten have general home improvement programs which can include funding for home modifications. The two governments with the most extensive programs have been Ontario and Quebec. Ontario has provided up to $15,000 per home under the OHRP-D program which evolved from a general home improvement program to one which also provided money for home modifications. The Ontario government recently terminated funding for OHRP-D. In Quebec, there have been at least three major home modification programs. The Quebec RAAP program offers up to $16,000 in grants for home owners, $8,000 for tenants and $4,000 for roomers; while their provincial automobile insurance program, SAAQ has offered unlimited amounts of funds to persons who were seriously injured in an automobile accident. The provincial workers' compensation program, CCST, has also provided an unlimited amount to help injured workers to adapt their homes. The average expenditures per individual for these programs in 1992 was $5,000 and $4,000 respectively.

There is wide variation in how much control consumers have over these programs. On one hand, agencies may themselves determine what their clients need and undertake the housing adaptations. On the other, many programs fund individuals directly to hire their own construction firms and oversee the work. Participants often report concerns in dealing with these programs from the paternalism of the staff to the limited scope of some programs. Many are chronically underfunded and run out early in the year. Still, until recently, Canada had been far more fortunate in terms of the coverage of these programs than the United States (Dunn, 1994).

Barrier-Free Housing Codes

The National Research Council of Canada is in charge of developing National Building Codes (NBC). These codes are advisory documents to help make building regulations uniform across Canada. The federal government does not have the authority under the Constitution to require that the provinces and territorial governments adhere to these codes. However, since 1965, the National Building Codes have incorporated barrier-free standards. Every five years, the National Research Council revises these guidelines. The latest codes were developed in 1995 and contain Section 3.7 which deals exclusively with barrier-free standards. These codes deal with public buildings as well as apartment buildings. This discussion considers the codes for apartment buildings.

Many of the provinces and territories also update their building codes every five years and have adopted many of the guidelines of the National Building Codes including the sections which deal with barrier-free requirements for housing. However, New Brunswick, Prince Edward Island, the Yukon and the Northwest Territories, either do not have building codes, or have building codes that do not address barrier-free requirements. None of the provinces or territories have any barrier-free requirements for housing under four units or existing apartment buildings unless these building are undergoing substantial rehabilitation.

The building codes in most of the provinces and territories have incorporated more progressive barrier-free standards over time. These codes basically require that parking, external pathways, common areas including hallways be accessible in new apartment buildings. However the provinces and territories have not adopted some of the adaptable housing features of the

U.S. Fair Housing Act Amendment (FHAA) of 1988., The FHAA requires that, from 1991 onwards, all new buildings with four or more units including public, private and non-profit housing throughout the United States be designed according to new criteria including several adaptable/ universal design housing features, so that everyone can adapt a unit to suit his or her unique needs. The FHAA requires accessible routes throughout all units; accessible light switches, electrical outlets, thermostats and environmental controls in all units; reinforcements in all bathroom walls to allow for installation of grab bars; wheelchair accessible kitchens and accessible bathrooms in all units.

Some of the provinces and territories are stressing more rigorous barrier-free design standards. However, government organizations have not yet emphasized flexible universal features such as adjustable counter tops for all units. Instead they have designed a few units for individuals with disabilities. Many government agencies and construction companies continue to stress the concept that facilities for individuals with disabilities should be specialized and separate. Increasingly, the provinces and territories are involving consumers in the development and control of their barrier-free housing codes. For. example, in Alberta consumers with a wide range of disabilities have been involved with the Minister's Committee on Barrier-Free Design and the Premier's Barrierfree Advisory Committee. Nevertheless, many consumers continue to be frustrated with the lack of responsiveness of the codes and the limited amount of consumer participation and control of the regulatory bodies.

Accessible Transportation

The jurisdictional issues of accessible transportation in Canada are complex. Generally, if a public carrier can cross borders between provinces or territories, then it is the responsibility of the federal government. The federal government thus has jurisdiction over air travel, navigation, inter-provincial rail travel, inter-provincial buses, new bus vehicle standards and new automobile standards. The provinces and territories have jurisdiction over ferries, trains including commuter trains and northern transportation, commuter buses, buses crossing municipal boundaries and the traffic rules. The local municipalities usually have responsibility for taxis, municipal buses, subways or light rail municipal transit and specialized transportation services.

Specialized (Parallel) Transit

Until very recently, most provincial and territorial government efforts have focused upon funding municipalities and other organizations to provide accessible vans and mini-buses. Many areas of the country, particularly rural and remote areas, still do not have this type of service. According to Savona (1992), consumers encounter a multitude of problems with socalled local accessible transit and have even more difficulties obtaining accessible transit between municipalities and in rural areas. These specialized systems may reinforce stigma, paternalism and lack of consumer control of services. Individuals often have to book trips with specialized transit services at least a week in advance. In many areas specialized transit remains infrequent and often unco-ordinated with other modes of transportation. However, many jurisdictions are moving towards making other forms of transportation available as a "family" of transportation, thus providing greater choice to consumers.

One innovation is the development of accessible and affordable taxi service, which offers a number of advantages: consumers themselves determine the timing of rides, thus allowing for spontaneity. Taxis are an integral part of mainstream living and usually do not stigmatize their passengers. In addition, taxi services tend to be relatively inexpensive compared with some forms of specialized transit (Fiander, 1987).

Several provinces have accessible taxi programs including British Columbia, Alberta, New Brunswick and Ontario. As a result of consumer lobbying a program in Vancouver and Prince George in British Columbia introduced "taxi saver" coupons to be sold for 50% of their value to individuals with disabilities. In 1986, Ontario began paying taxi companies up to $10,000 as a capital incentive grant to make taxis accessible. However, individuals with disabilities pay the regular fare unless their municipality subsidizes these systems. Since 1993, New Brunswick has paid taxi companies up to $20,000 or 75% of the costs of purchasing an accessible taxi. Here too, the taxi fare is the same as a regular ride. This growing emphasis on accessible taxi programs offers participants increased freedom and choice.

Automobile Conversion Programs

Several governments now provide funding to purchase modified automobiles including cars, vans and trucks. The Alberta Advisory Committee on Barrier-Free Transportation stressed that private vehicles are the least expensive mode of urban transit for individuals with disabilities (Alberta Advisory Committee, 1992). Accessible private vehicles provide flexibility and freedom for consumers. However, very few provinces or territories have automobile conversion programs which are available to all individuals with disabilities. The Health Science Centre in Winnipeg has modified automobiles since 1975, but modifications are limited to $1,500. Many governments have vocational rehabilitation programs which may provide funding to clients who need a modified vehicle to go to and from work. Some government agencies exempt automobile conversions from sales taxes.

Quebec has three auto conversion programs. Starting in 1979, !Office des Personnes Handicapees du Quebec (OPHQ) provided a Vehicle Material Aid Program. This program is funded out of the province's general revenue and allows individuals of all ages a maximum of $22,000 for vans and $11,000 for cars. The average expenditure in 1992 was $4,200 per vehicle. The workers' compensation program, CSST, has operated a vehicle adaption program since 1978 for people with work-related accidents. Although there are no specified limits to this program, the average payment for 1992 was $1,900. Finally, the Quebec's automobile insurance program, SAAQ has had a similar program with an average expenditure for 1992 of $2,300.

New Brunswick also has a vehicle retrofitting program which resulted in 1988 from a consultant's report suggesting changes to New Brunswick's accessible transportation strategy (Fiander, 1987). The Vehicle Retrofitting program is open to anyone recommended by an occupational therapist or physician. Only certain modifications are allowed, and these adaptations must be sanctioned by these professionals. This program covers 80% of the first $5,000 of the retrofitting costs, and 50% of the next $6,000 to a maximum of $7,000.

Accessible Buses

The provincial and territorial governments can develop policies which promote accessible municipal buses, buses between municipalities and commuter buses for large urban areas. However, few of them have comprehensive policies for doing so. In 1992, Alberta introduced a capital grants program to fund municipalities purchasing low-floor buses. British Columbia agreed in 1989 to share with the municipalities the extra costs of making new buses accessible including adding low-floor buses. Vancouver was the first major transit system in Canada to introduce lift-equipped buses. All new buses in Vancouver are to be accessible for people using wheelchairs.

Ontario has several innovative schemes. From 1985-92, the Ontario government developed an Easier Access Program which subsidized municipalities making buses partially accessible. This program ensured that buses had extra handrails, priority seating, improved lighting and higher visibility. Starting in 1992, the Ontario government instituted a full-accessibility program which requires that all new municipal buses be low-floored and have easier access features in order for municipalities to receive provincial capital and operating subsidies. Lowfloor buses are not usually wheelchair accessible. They are much lower to the ground, so that individuals with limited mobility can get on and off these buses more easier. In addition, all future Go Transit commuter buses will be more accessible. Ontario is moving from a policy which has stressed parallel transit to one which is beginning to focus upon more mainstream accessibility.

Many of the provinces and territories have left the provision of accessible bus transportation up to the municipalities and to private operators. Ontario is the first province to require that municipalities make all future buses low-floored. However, consumers continue to stress that existing services are inadequate and that their choice of transportation is usually limited to specialized parallel systems. New policies are being implemented very slowly (Feld, 1992).

Accessible Trains

The -federal government has responsibility for most of the passenger train service in Canada because it crosses provincial borders. The provinces have usually made only minor policy changes related to their own trains. Since 1984, the Ontario Northlands Transit started making its cars accessible. All new cars have wheelchair tie downs, seating for people with limited mobilities and accessible washrooms. In 1990, Ontario started making its commuter Go Train accessible. Now all Go Trains have one accessible car. However, they do not have accessible washrooms.

The subway systems in Canada are only recently becoming partially accessible. In 1992 Ontario provided Metropolitan Toronto with $54 million over five years to make 25 out of the 63 subway stations accessible. Montreal's subway is not accessible. Several cities in Alberta and British Columbia have light rail transit systems. Edmonton's stations are accessible, and two of three of the lines in Calgary are accessible. All stations in Vancouver are accessible, except Granville.

Despite these changes, many consumers have been extremely frustrated with the slowness of making buses, trains and subways accessible and with the cutbacks to existing programs (Feld, 1992). An alternative civil rights strategy has worked in the United States to end discrimination and to bring individuals with disabilities into the economic and social mainstream of American life. The Americans with Disabilities Act (ADA), passed by Congress in 1990, provides a different approach to regulating accessible transportation of buses and trains. The ADA requires that the following be accessible: all new public and private buses, train and bus stations, rapid rail and light rail trains, passenger cars in intercity and commuter trains and commuter rail and in-city rail stations. All communities with fixed schedule route transit must also provide a paratransit system to serve eligible individuals. Key stations in rapid light rail and rapid rail such as subways must be accessible. Bus and rail companies have to install Telephone Devices for the Deaf (TDD), if the carrier offers telephone services to the public. However, the ADA has phase-in times and major qualifications such as not requiring communities to make expenditures which cause "undue hardships". The implementation of the provisions on private buses has been postponed for 6 years for large providers such as Greyhound and 7 years for small bus companies. All stations for commuter rail trains have 3 years to be made accessible and all stations for intercity rail have 20 years. Key stations for rapid light rail such as subways have to be accessible in 3 years and two-thirds of all stations by 20 years (U.S. Congress, 1990). Nevertheless, the ADA has provided a lot more choice and freedom for individuals with disabilities in the United States.

Personal Supports

Policies related to personal supports are very complex and confusing in Canada. The provinces and territories are responsible for community services. The federal government has an indirect role through cost-shared funding with the provinces and territories, or contributing through its responsibility for certain populations such as Status Indians. The provinces may provide these services directly, or purchase them; provide direct cash assistance or vouchers; and/or offset costs through tax provisions. They generally provide these services through community services or health departments. Municipalities often assist in delivering and paying for the services, while non-profit agencies are the providers (Torjman, 1990).

Therefore, there are multiple levels of jurisdiction involved in personal support policies. Individuals with different disabilities or ages may fall under jurisdictions of different government departments or under multiple departments. Cruikshank (1991) points out that it is no wonder consumers are confused and frustrated by this complex system. In addition, there are no common agreed-upon definitions of personal supports which can include such services as attendant services, home health care and homemaker services. Other services include respite services for "care-givers" and technical aids and equipment. Finally, there are different types of personal supports for individuals who may have a developmental or mental health disability. Many not only provide support, but also skills training, so that individuals who have been institutionalized can live more independently inihe community. These services include home support workers and community living skills coaches.

Torjman (1993) points out a number of fundamental problems with the overall system of personal supports in Canada including access, eligibility and responsiveness. Problems related to access include disparities in the availability of personal supports, complexities of the system and high costs. Consumers are often excluded because of complicated eligibility rules. Individuals who receive assistance often find the services unresponsive to their individual needs. Many services emphasize the medical model, dependency relations and people being categorized. Lord and Osborne-Way (1987) found that many supports did not emphasize the concepts of control and independence. Consumers often felt that they lacked control in scheduling, hiring, firing and directing their staff. In addition, they felt that there were often too many uncoordinated agencies in their lives.

Some of the provinces have developed innovative approaches to personal support services. Manitoba has been noted for providing the most extensive services for people with disabilities in Canada. In terms of its traditional outreach model, Manitoba's Home Care Program provides comprehensive and coordinated services primarily though regional agencies. This approach can meet a wider range of individual needs for attendant services, medical assistance, supplies and equipment as well as rehabilitation.

Lord, Hutchison and Farlow (1988) explain one alternative model to the traditional service is Support Service Living Units (SSLUs). This model has been developed to combine both housing and personal supports in some of the provinces. There are -essentially five different models including: large residential settings, group homes, segregated apartments, transitional living and integrated or dispersed apartments. This last model allows for some degree of consumer control over these services. However, Lord, Hutchinson and Farlow (1988) argue that consumer control is often minimal. Individuals with disabilities live in apartments dispersed throughout large rental complexes. A service agency in the building offers 24-hour support and on-duty attendants. The Manitoba version is called Fokus housing after the original Scandinavian model.

The real innovative feature in personal supports in Canada is direct individualized funding which permits the consumer to hire, fire and direct his or her own support worker. Lord, Hutchison and Farlow (1988) describe the advantages including the fact that consumers can often contract one individual to provide all support services, rather than receiving services from several people and that they can define their own goals for service. These services are usually significantly cheaper than traditional agency based services. Potentially, individuals with any type of disability can use such funding to purchase services relevant to their needs.

Although a relatively new service concept in Canada, individualized funding has broad appeal to both consumers and government officials. Ten of the twelve provinces and territories, either have an individualized funding project or are considering starting one.

Some forms of individualized funding have existed in Canada since the early 1980s. For example, in 1980, the Quebec office for disabled persons (OPHQ) provided funding directly to consumers to purchase attendant services. In 1981, the Quebec provincial automobile program (SAAQ) started providing funding to people requiring attendant services as a result of a car accident. As well, in the early 1980s, the Quebec workers compensation board (CSST) began paying workers directly for home supports after their rehabilitation worker prepared an individualized plan. Since 1985, Newfoundland has provided the Enriched Needs Program under the Social Assistance Act. Eligible applicants can either hire their attendant privately or pay an agency to provide this service, although Cruikshank (1991) points out that there are many administrative restrictions with this program. Since the 1980s British Columbia, Alberta, Nova Scotia and New Brunswick also have developed specialized individual funding programs.

Consumer-run and controlled programs for individualized funding started in Canada in 1978 with the work of the Community Living Society (CLS) in Vancouver, a society created by a group of parents who wished to ensure that their children, who had mental health disabilities, could live in the community. Several consumercontrolled programs have been developed in Canada since then. For example, the Manitoba Department of Health has been co-sponsoring a pilot project in Winnipeg with the Independent Living Resource Centre (ILRC). The Department of Health funds the project participants, or selfmanagers directly. They are all able to select, hire, train, fire, pay and supervise their own staff. The Winnipeg ILRC receives a grant to provide general information to consumers, create training materials, run group training and develop rosters of staff for hire.

Probably the most extensive consumercontrolled pilot program has been operating in Ontario. The Ontario Ministry of Health has funded this direct-funding self-managed attendant services model for adults with physical disabilities. It is administered by the Centre for Independent Living in Toronto (CILT). Consumers have been involved in every aspect of this program, from development to refinement to implementation and evaluation. Approximately, 100 consumers throughout the six regions of Ontario received direct funding under this new initiative in 1996. Participants are selected on a province-wide basis and represent a range of service needs, types of communities and ethno-cultural and linguistic backgrounds (Parker, 1994). The program allows participants control, choice and freedom.

Other approaches in Canada include the "broker model", which provides a mediating structure between the individual, the community and the service system. Several brokerages have been developed in Canada. For example, the Community Living Society (CLS) in Vancouver has an agency brokerage which both provides direct services and helps consumers find services and resolve any problems with the agencies. However, the CLS has found itself in the position of advocating against its own employees. As a result, parents developed the Community Brokerage Service Society (CBSS) as a brokerage independent of any service provision. The Calgary Association for Independent Living (GAIL) is also an independent broker and promotes the development of circles of friends and relatives that advocate for the consumer. In addition to the broker model British Columbia has developed micro boards for providing services to individuals with developmental disabilities. These micro boards are incorporated groups of people specifically set up to support usually one individual.

DISCUSSION AND CONCLUSIONS

Provincial and territorial governments are just beginning to stress independent living policies in which consumers have control, flexibility and choice in services. Until very recently, many traditional policies stressed separation, stigma, dependency and medicalization. Although more individuals with disabilities are living in community settings, many of the same relationships which existed in institutions were transferred and perpetuated in the community (McKnight, 1995).

Now policies are beginning to emphasize the need of individuals with disabilities to control their programs and to participate equally in Canadian society. Several housing adaptation programs were developed in Canada during the Decade of Disabled Persons. However, consumers have expressed many concerns with these programs including the lack of consumer control. Some of the provinces and territories are developing building codes which emphasize accessibility standards. These building codes need to emphasize universal adaptable housing features which are flexible to individual needs. Transportation systems are very slowly moving towards more consumer control, choice and flexibility with a family of accessible transit although the majority of government funding is still being allocated to specialized transit. Ensuring that mainstream transit is accessible including taxis and providing programs to modify consumers' vehicles are some examples of policy approaches which emphasize IL principles. One of the major areas of innovation has been direct individualized funding programs which are controlled by consumers. These programs allow for consumer control, choice and flexibility. One challenge is to move these programs from small scale initiatives into a substantial option in a system of personal supports which are controlled by consumers.

The reality in Canada is that most individuals with disabilities continue to confront multiple barriers in housing, transportation and personal supports (Statistics Canada, 1991). There has been some progress during the Decade of Disabled Persons in policies which are beginning to incorporate independent living principles. However, consumers continue to confront substantial obstacles such as dealing with inaccessible housing and transportation and obtaining personal supports which they control. There is considerable variation across Canada in terms of the extent that these policies have incorporated independent living principles.

Unfortunately, many of the gains made by consumers during the International Year and Decade of Disabled Persons in Canada are being quickly eroded by dramatic reductions in community service spending in Canada. The strength of the Canadian system has been its community service safety-net. However, the federal government as well as the provincial and territorial governments have begun to slash their funding for barrier-free housing, accessible transportation and personal supports. For example, the federal government dramatically reduced its funding for the national RAAP-D program. Another trend is towards devolution of responsibilities from the federal government to the provincial and territorial governments and to the municipalities. As a result, there is a growing patchwork of services across Canada (National Council of Welfare, 1995).

The United States has focused upon its history of civil rights to promote the rights of individuals with disabilities. These rights are in keeping with a country that emphasizes individual liberties and self-help. The Americans with Disabilities Act and the Fair Housing Act Amendment have helped eradicate many barriers in the United States. Such rights-based legislation appears to have a tremendous potential even during periods of recession. Consumer organizations have played a major role in promoting disability rights legislation in Canada (Baker, 1992; Canadian Disability Rights Council, 1991), despite the problems associated with the jurisdictional arrangements of the BNA Act. For example, consumer groups were instrumental in bringing about Section 15 of the Charter of Rights in the Canadian Constitution in 1982. Section 15 guarantees equal rights for men and women with disabilities under the Constitution. Most recently, the Federal Task Force on Disability Issues (1996), which consisted of a wide range of disability organizations across Canada, recommended establishing federal and provincial legislation similar to the ADA. Not only do these rights need to be established in Canada, but they also need to be translated into specific regulations which are adopted across Canada. They need to be consistently enforced to create a more independent living environment throughout the country.

Government innovations which support independent living principles need to be further developed and dramatically expanded. Plus, effective coalitions need to continue to be built in order to combat the dramatic cutbacks in funding. These coalitions can bring together consumer organizations, government agencies and other concerned individuals and groups. As a result, new approaches to government policies can be formulated and implemented which will truly ensure independent living throughout Canada.


Les politiques gouvernementales commencent à aborder quelques-uns des obstacles économiques, politiques et sociaux qui rendent la vie indépendante dans la communauté difficile pour les personnes handicapées. Cet article présente une partie des resultats d'une étude des politiques gouvernementales qui soutiennent la vie indépendante au Canada pendant et apres la Décennie des personnes handicapées. La recherche documente les problèmes majeurs ainsi que quelques-unes des initiatives gouvernementales positives qui soutiennent la vie indepéndante. Cet article met au point les politiques gouvernementales novatrices qui commencent à répondre aux besoins fondamentaux des personnes handicapées. Cette information peut être utile à encourager des efforts semblables ailleurs au Canada.


 

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