A Study on the Impact of Independent Living Resource Centres in Canada

The following are the results of a two year study on the impact of Independent Living Centres in Canada (ILRCs). Put together by researchers from Canadian universities and research centres, working in partnership with the Canadian Association for Independent Living (CAILC) (now IL Canada). ILRCs are a major force in promoting the independent living (IL) concept. ILRCs offer individuals with disabilities consumer controlled programs such as peer support, individual advocacy, and information and referral. These programs are an alternative to traditional medical and rehabilitation services.

 

What was the Goal of this Study?

The goal of this two year study was to answer the following questions:

• Do Independent Resource Centres impact individuals with disabilities who use the Centres, and if so, what are the impacts? (Year 1)
• Do Independent Living Resource Centres impact the community, including formal services/agencies, information groups, families and friends, and if so, what are these impacts? (Year 2)

 

How Did We Gather the Information?

Year 1: A qualitative research approach, which relied on in-depth interviews with ILRC users, was used to develop our understanding of individual impact of the ILRCs. Three ILRCs which best met the criteria were select: the ILRCs were longstanding (e.g. over five years) and well-established; had a relatively strong funding base; had key core independent living components in place; and represented different geographic locations. A total of 70 people in three locations were interviewed. The study participants included people who used either many or a few ILRC programs; who were either short or long-term users; and who had a variety of types of disabilities. There were two kinds of interviews; first, individual interviews which gave people an opportunity to share in an in-depth way their personal experience with the ILRC and second, small group interviews, which made it possible for people to hear other people's views on the impact of ILRCs on individuals and to express their views accordingly. A computer program helped organize the data in the analysis stage and assisted the researchers in identifying the major themes from the interviews.

Year 2: A quantitative approach, employing a detailed survey which was sent to a large number of community members, was used to find out about the community impact of ILRCs. A total of 270 surveys were mailed to people connected to the ILRC in each of the three communities studied in Year 1. The random selection included people in three main groups: formal organizations; information groups; family members and friends. In addition, board members, staff and volunteers were added as a fourth group. A total of 150 surveys were returned (37.8%) and analyzed using descriptive statistics and tests of statistical significance.

 

Year 1: Impact on Individuals

The Year 1 findings were divided into four major themes. In the following presentation, each theme is stated and the illustrated by a quote from a consumer. Each theme is then explained by the patterns identified in the information gathered during in-depth interviews with consumers.

 

Theme 1: Many positive impacts resulted when people were treated differently at the ILRCs than they were in the community, not as clients and disabled persons, but as valued citizens and full contributing members of the community.

They treat you equal...they don't make you feel like you are inferior. They give a whole new look to what a social worker should be. They become your friend and work side by side. Their goal is independence, and they are by your side until you are ready to fly.

 

Patterns

At the ILRCs, people were treated:	as valued citizens as full contributing members of the community with equity and fairness
In the community, people continued to be devalued:	professionals and agencies displayed negative attitudes the public continued to hold negative attitudes family members often exhibited inappropriate attitudes towards their family member
People acquired useful skills and achieved a sense of accomplishment through making a contribution in ILRCs:	volunteering was a good way to acquire new skills involvement in committee work helped build new skills participation in education sessions and peer support groups built skills
ILRC involvement was empowering for people:	recognized people in charge of their own lives enhanced self-esteem encouraged independence recognized the importance of interdependence
People felt well connected to the ILRCs, almost part of a family:	the kind of place to make friends and feel connected social functions were a way to meet people and get connected
Good communication at the ILRCs facilitated people being treated in valued and democratic ways:	being listened to good process for dealing with issues and problems being able to count on the ILRCs and having access to information

 

Theme 2: The ILRCs were trying to narrow the gap between the way people were treated at the ILRCs and the way they were treated in the community, by working towards community change.

I've gone to the conferences. It would appear that the ILRC has been a strong enough voice to be noticed. They have been strong enough to draw the attention of the MPs and the MPPs. I've seen them in the paper. The ILRC has some impact on the community (consumer comment).

 

Patterns

Working with community agencies through research and program development:	partnerships monitoring and service development to ensure high quality services in the community education of the community about people with disabilities
Community Impact was important but complex:	more strategies were needed for community outreach and building

 

Theme 3: Contact with the IL movement through the ILRCs and other channels has led some people at each site to develop a clearer understanding of the IL philosophy and movement. These people have a strong belief in the potential of the ILRCs.

In other areas, they talk over you, they make decisions for you, then some people go back into their shell. The ILRC never does that; they always give you the feeling that you are in control. They give you the feeling you can do it. They work with you and then you can do it. It shocks people that we can come out and say what we want (consumer comment).

 

Patterns

People had a belief in the potential of the ILRCs:	those who believed in the potential saw ILRCs as an important tool for further the IL movement those who had doubts about the potential felt that the IL philosophy and movement could be furthered through, for example, other consumer driven organizations
ILRCs had a positive impact in raising awareness and getting people involved in the IL movement:	increased involvement in the IL movement the individual empowerment skills development program was key hard and slow process of getting consumers involved
Research and reflection played an important role in making sure the actions of the ILRCs were linked to the IL philosophy:	a clear mission was what brought the work of the ILRCs together and kept it focused a good system of feedback and renewal maintained the link between vision and practice, and lead to impacts such as increased consumer control
Leadership played a key role in nurturing the IL philosophy:	strong visionary staff needed

 

Theme 4: When ILRCs experienced management and implementation difficulties because of external constraints and/or internal challenges, the positive impacts of the ILRCs were reduced.

There was a known problem. It was then put on the management. There was no clear process in dealing with the problem. There was no evaluation system (consumer comment).

 

Patterns

External constraints:	transportation in the community was a major barrier at each site, making it difficult for the ILRCs to do their job unreliable and limited funding made it difficult for the ILRCs to do their job
Internal challenges:	consumers felt that communication difficulties between consumers and staff affected impact consumers felt that when staff did not have a disability, some of the impacts were not as positive
There was concern about how well the cross disability mandate of the ILRCs was actually being achieved:	the more contact and co-operation was needed with people who have a variety of disabilities and community groups despite concerns, most people agreed with continuing the cross-disability mandate
Peer support programs were experiencing some difficulty:	they seemed to be negatively impacted when resources (e.g., funding) or supports (e.g., transportation), were reduced or limited

 

Impact on the Community

The Year 2 survey looked at three main areas: the community's familiarity with the ILRCs and what ILRCs did; the community's actual involvement with the services and programs offered by the ILRCs; and the community's perception of the impact that the ILRCs were having on their communities. Overall, people from the three communities indicated high levels of familiarity, involvement, and impact with the various aspects of the ILRCs. While we don't have room here to provide many tables, we thought you might be interested in one or two which illustrate the findings.

 

Familiarity

• People in the community indicated that their general familiarity with the ILRCs, and their philosophy of independence and self-determination, was very high (see Table 1).
• People in the community were most familiar with the concrete and highly visible information and referral and individual advocacy programs.
• People in the community were less familiar with the peer support program and the research and development of specific new programs.

Table 1 Familiarity with the Independent Living Resource
Familiarity with research and program development Familiarity with the Peer support program Familiarity with the individual Advocacy/consultation program Familiarity with the information and referral program General familiarity with the ILRCs Familiarity with the philosophy of independence and self-determination	finish table

 

Involvement

• The average length of involvement with the ILRCs was approximately 4.1 years (the range was from one month to fifteen years).
• People in the community were most involved with advocacy/consultation, followed by research and program development and information and referral.
• Individuals were very knowledgeable about the newsletter of the ILRCs and general information about the ILRCs. They were less involved with the technical supports and the libraries of the ILRCs.
• The involvement of people from the community varied in relation to the specific parts of each core program.
• • The greatest variation was found within information and referral. For example, most people used the newsletter, which was just one aspect of information and referral.
• The fewest number of people were involved with the peer support group.
• many people pointed out that all aspects of the ILRCs were vital and important and work in unison.

 

Impact

• People from the community perceived that the impact of the ILRCs on their community was high.
• People from the community felt that the ILRCs were highly responsive to their requests.
• They particularly rated highly the extent to which the ILRCs played a role in promoting the IL movement.
• The order of impact for core programs was:
• • individual advocacy/consultation
  • research and program development
  • peer support
  • information and referral (see Table 2)

Table 2 Ranking of Core Programs
Ranking/ Rating	Response Category
	Familiarity	Involvement	Impact
First	information and referral	individual advocacy/ consultation	individual advocacy/ consultation
Second	individual advocacy/ consultation	research and program development	research and program development
Third	peer support	information and referral	peer support
Fourth	research and program development	peer support	information and referral

• Staff were viewed as very supportive during consultations and very effective at advocacy.
• Individuals were particularly positive about community partnerships in new projects and joint committees and less specific about research activities.
• Individuals felt that in relation to the empowerment of consumers, ILRCs:
• helped individuals gain knowledge and awareness
• • enhanced consumers' self-esteem and self-confidence
  • assisted individuals in gaining control over their lives
  • elped individuals strengthen their social networks.

 

Concerns

• Individuals felt that the lack of adequate funding for ILRCs contributed the most to the weaknesses or limitations of the Centres.
• The ILRCs need to heighten their profile in the community, better inform the public about their role, and assist more in changing attitudes and misconceptions in the community about individuals with disabilities.
• The ILRCs were ranked fairly low on meeting their cross-disability mandate. ILRCs need to continue their efforts in connecting to more diverse constituencies.

 

Discussing the Findings

Treating people as valued citizens is still something which differentiates ILRCs from many other community services

One of the fundamental beliefs of the Independent Living Resource Centres is that people with disabilities can make profound positive changes in their lives if they are treated with respect, valued as contributing members of a community, and provided with opportunities to recognize and exercise their personal decision-making and risk-taking. The results suggest that ILRCs succeed, in large part, not simply because they provide an opportunity to learn skills, access information, or receive support, but because they do so in a way which is consistent with the Independent Living (IL) philosophy. This philosophy builds on the strengths and capacities of the individual, promotes consumer control and empowerment, and works for individual change which is embedded in the realization of life as a valued member of a community. From this study we can see that the ILRCs are developing a way of involving consumers which serves to maintain and develop the IL philosophy.

In explaining why ILRCs have more positive impacts on people's lives than rehabilitation and other formal services, consumers identified the way they were empowered as decision-makers and the driving principles or philosophy of the ILRCs. Treating people as valued citizens is still something which differentiates ILRCs from many other community services. Improvement in the quality of life for people with disabilities requires both skill development as well as the removal of environmental, social, and economic barriers. These goals are inseparable. However, it is equally evident from this research that the problems which need to be addressed are complex and will require on-going effort on the part of consumer groups over a long period of time.

All core programs contribute to an overall IL environment at the three ILRCs. Each uniquely operates in line with the same guiding principles of empowerment, inclusion, and consumer control. Personal empowerment is often characterized by increasing competence and confidence. The individual empowerment afforded through involvement with the ILRCs seems to have been particularly important in relation to people being able to become competent in a variety of community living skills, as well as fostering increased confidence and self-esteem.

Generally individuals are involved with some of the programs of the ILRC, have knowledge of more programs than they are involved with, and highly value the programs with which they are directly involved and/or see as benefiting others. Not only is this true for individuals, but for the community as well. The community's familiarity with ILRC programs and other aspects of the ILRCs is higher than their actual involvement. Although there are numerous ways that knowledge about programs may be transferred (e.g., through the ILRCs, between external groups and organizations, or through informal networks among individuals and families), the important point is that familiarity with ILRC programs among both service providers (formal and informal) and families and friends is high, therefore increasing the potential to facilitate consumer choice.

Despite many successes, ILRCs continue to face a number of challenges. New strategies, for instance, are needed to reach out to others still struggling to overcome decades of discrimination and exclusion and to strengthen the cross disability mandate of the ILRCs. Due to financial, transportation, and management constraints, some people feel that their needs for peer support are not always met. Our results suggest that ILRCs experience difficulties which are common to many organizations. These constraints need to be seen as positive challenges which are required of any efforts to create consumer driven, community based alternatives.

 

Directions Emerging From This Study

The ILRCs are having significant impact across Canada which should be celebrated with all stakeholders

Other important directions for the ILRCs are to:

• continue to demonstrate how personal empowerment, respecting and supporting people with disabilities in making a contribution, and being managers of their own destiny, contribute to social change.
• create a stronger community context for individual change through innovative community partnerships and education.
• recognize that the issues and challenges both in the ILRCs and the community are complex and will require on-going effort over a long period of time on the part of the ILRCs, consumer groups, community agencies, and government.
• continue to see the hiring of people with disabilities within their organizations as a priority.
• continue to develop the cross-disability focus.
• clarify some of the goals and strategies in certain program, particularly peer support.
• recognize the ongoing evolution of ILRCs as an alternative human service organization and the challenge of creating a responsive structure that builds on the independent living (IL) philosophy. This study, for example, highlights the importance of both visionary leadership and ongoing refection and renewal to ILRCs.
• make people aware of the important role of the ILRCs in further goals of the independent living (IL) movement.
• continue to reassess CAILC's (now IL Canada) position on systematic advocacy.

 

What is an Independent Living Resource Center?

Since some of the people reading this newsletter may not have heard about ILRCs, we though we would describe what they are and what they do. In Canada, the independent living (IL) movement is represented by IL Canada and more than 20 ILRCs. Emphasizing individual empowerment and control over decision-making, ILRCs are funded from a variety of federal, provincial and local sources.

The IL concept emphasizes that people with disabilities can best identify their own needs. The IL concept also stresses that people with disabilities can have productive lives in the community through self-help, empowerment, advocacy, and the removal of environmental, social, and economic barriers.

While each ILRC is unique, all are based on a set of guiding principles that are central to the IL philosophy: consumer control, cross disability, community based, non-profit, and promotion of integration and full participation. In order to ensure consumer controlled policy directions and insights, the majority of the staff, volunteers, board members, and membership are persons who have disabilities.

Among the things that ILRCs do are information and referral, peer support, individual advocacy, and service development. The latter includes such things as research, demonstration projects, and monitoring of existing services. The ILRCs provide people who have disabilities with self-management skills, self-confidence, tools, support, and resources, which make it possible for individuals to achieve their personal goals. Generally, ILRCs are not providers of services such as support for independent living or day programs. Such services are usually available from more traditional community agencies.

 

Helpful Canadian Resources

Canadian Association for Independent Living Centres. (1991). Guidelines for Independent Living Centres in Canada . Ottawa, ON: Canadian Association of Independent Living Centres.

Carpenter, S. (1991). The Canadian model of Independent Living Centres: Trends and issues . Rehabilitation Digest22(2), 3-7.

Driedger, D (1989). The last civil rights movement: Disabled Peoples International . London: Hurst.

Dunn, P. (1994). Government policy innovations in barrier-free housing, accessible transportation and personal supports. Winnipeg: National Independent Living Conference.

Enns, H. (1986). An excerpt from the historical development of attitudes toward the handicapped: A framework for change. In A. D'Aubin (Ed.), Defining the parameters of independent living . Winnipeg, Manitoba: Coalition of Provincial Organizations for the Handicapped.

Hutchinson, P., Pedlar, A., Lord, J., Dunn, P., McGeown, M., Taylor, A., & Vanditelli, C, (1996). The impact of Independent Living Resource Centres in Canada on people with disabilities. Canadian Journal of Rehabilitation . in press

Jongbloed, L., & Chichton, A. (1990). Difficulties in shifting from individualistic to socio-political policy regarding disability in Canada. Disability, Handicap & Society , 5(1), 25-35.

Lord. J., McGeown, M., Taylor, A., & Young, S. (1992). More than just another human service . Ottawa: Canadian Association of Independent Living Centres.

Robinson, R. (1991, Summer). Canadian Association of Independent Living Centres: Growing pains & empowerment. Abilities , 16-19.

Simpson, A. (1993). Individual advocacy through the Independent Living Centre. In A. Neufeldt (Ed.), Independent living: An agenda for the '90's (pp. 5-14). Ottawa: Canadian Association for Independent Living Centres.

Valentine, F. (1994). The Canadian Independent Living Movement: An historical overview . Ottawa: Canadian Association for Independent Living Centres.

 

Research Team

Project Director	Peggy Hutchinson
Researchers	Sue Arai Mary McGeown Andrew Taylor Chris Vanditelli
Co-investigators	Peter Dunn John Lord Alison Pedlar

 

Supported by:

Social Sciences and Humanities Research Council of Canada

Thank you to the Canadian Association for Independent Living Centres, particularly their Research Committee, and the Centre for Research and Education in Human Services for their collaboration in the project. As well, thank you to the three ILRCs which participated in the study.

A copy of the complete final report is available from IL Canada.

Address correspondence to:
Peggy Hutchinson
Department of Recreation and Leisure Studies
Brock University
St. Catharines, ON L2S 3A1
Tel: (905) 688-5550 x 4269
E-Mail:

Or:
Canadian Association of Independent Living Centres
170 Laurier Avenue West, Suite 1104
Ottawa, ON K1P 5V5
Tel.: (613) 563-2581
Fax: (613) 563-3861
TTY: (613) 563-4215
E-Mail: