A Unique Project

In the early 1990s, persons with an intellectual disability on Prince Edward Island were feeling frustrated by the existing supports and services.

Individuals with an intellectual disability felt that they did not have enough say about the supports which they were receiving. Too often, they felt denied the opportunity to work, the opportunity to choose where they were going to live and the opportunity to access education and training in preparation for the job market. Overall, individuals with an intellectual disability on PEI felt they lacked the opportunities to be involved in the social and cultural activities of their communities.

These barriers and frustrations felt by persons with an intellectal disability were not limited to PEI. With over six years of research from The Roeher Institute, the Canadian Association for Community Living (CACL) had identified similar findings across Canada. Based on these findings, CACL met in 1993 with opposition MP Paul Martin to discuss options to eliminate some of the barriers facing people with an intellectual disability.

Mr. Martin was interested in the fact that most people with a disability find it is the way in which they receive supports and services, and not their disability, that causes restrictions. These restrictions prevent individuals from participating in their communities and the labour market.

With the interest of Mr. Martin, CACL asked that Ottawa and the provinces combine the money that they channel into piecemeal projects. With the combined dollars, a joint project -- Choice & Opportunity -- could be developed to support persons with an intellectual disability to be full, participating members of their communities.

The PEI Association for Community Living (PEIACL) worked with the Minister of Health and Social Services on PEI to capture interest in reforming resources to assist persons with an intellectual disability. The size of PEI and its commitment to health and social services reform created an environment favourable to change.

In the days leading up to the budget, CACL and PEIACL sought and received approval from the Government of PEI, Minister Lloyd Axworthy and the Prime Minister s Office to proceed with the joint project.

On February 22, 1994, in his budget speech, Minister Paul Martin announced the development of the Choice & Opportunity Project -- a project undertaken to develop and test a new delivery model which will provide increased opportunities for persons who have an intellectual disability.

Madonna Fradsham, Executive Director for PEIACL, states that, prior to the announcement of the project, "individuals and families on PEI were becoming increasingly discouraged and frustrated because the system was not able to give them the supports they needed. The project is providing them with the opportunity to have their voices heard and allow for real choices in all aspects of their everyday life."

Using a consultative and collaborative approach, work began in October, 1995, on the development of a new Planning and Resource Allocation Model.

The experiences, hopes, needs, dreams and aspirations of individuals with an intellectual disability, their families and those who provide services to them were central to the development of a new model.

With this in mind, an extensive interview series was planned, publicized and launched on PEI to determine the concerns of:
- individuals with an intellectual disability;
- their families; and
- service providers.

From August to November, 1995, 66 adults with an intellectual disability, 84 families of individuals with an intellectual disability, and 94 service providers were interviewed to determine needs and concerns. In addition, 98 focus groups were conducted to ensure the validity of the survey results.

The information drawn from the needs and concerns of persons with an intellectual disability and those supporting them provided concrete issues and concerns to address when developing the new Planning and Resource Allocation Model.

The process of development was not easy. However, the completed model represents the collective vision of individuals with an intellectual disability, their families, service providers and government: a vision of how barriers can be eliminated so that persons with an intellectual disability can become full participating members of their communities.

The Planning and Resource Allocation Model is composed of the following five components:

1) FACILITATORS
Because of difficulty in accessing information on available services, the model proposes that individuals with an intellectual disability and their families have the opportunity to contact a Facilitator.

The Facilitator will have knowledge and up-to-date information about the people, resources and opportunities available in both the community and in the formal government system. Facilitators will assist in contacting people who are likely to be helpful, and involve individuals with an intellectual disability and their families in planning and problem solving, if this is what the individuals and families want.

2) BUILDING A SUPPORTIVE COMMUNITY
To ensure that individuals with an intellectual disability do not remain on the margins of social and economic life in their communities, the model proposes that capacity be increased through community development so that communities become a more supportive place for people with an intellectual disability.

3) TOOLS FOR FAIRNESS
Presently, many decisions concerning specialized supports are discretionary, depending on the region of PEI in which an individual lives, the knowledge of the case worker or the assertiveness of the applicant. To combat this problem, the model suggests that a disability-related support schedule (human, technical and financial) be developed and available in text or on-line formats. Such information would detail who provides support, the location and the fair market cost.

Using the support schedule, individuals with an intellectual disability and their families could formulate an application for disability-related support. The support schedule will ensure that applications for disability-related supports are informed and based on fair market cost.

4) TOOLS FOR FLEXIBILITY AND INNOVATION
Traditionally, arrangements for disability-related services are not at the control of the person with an intellectual disability or his/her family. The PEI government often transfers funds directly to service providers. This can result in a person with an intellectual disability having to fit his/her needs to the service available, instead of the service adapting to the needs of the individual.

The new model proposes giving greater say and choices to the consumer of services. The model recommends identifying ways to provide purchasing flexibility to persons with an intellectual disability. Various funding options will be explored.

5) HELPING SERVICES
The model recommends that service providers be equipped with training, professional development and required resources. The model proposes that workshops be developed in collaboration with individuals with an intellectual disability and service providers to facilitate the sharing of information, tips and strategies.

MODEL DEMONSTRATION
Presently, Model Components are being demonstrated in East Prince, where the first of a planned staggered demonstration is occurring.

Under the guidance of a Provincial Committee, each of the remaining four Health Regions in PEI are building the groundwork for change and working to ensure their regions are ready to implement model components.

Over the next 14 months, individuals with an intellectual disability on PEI can take pride in the results that will begin to emerge as a result of the Choice & Opportunity Project. In upcoming issues of ABILITIES magazine, we will update you on the very real changes that are occurring in the lives of persons with an intellectual disability on PEI.

For further information, contact: Choice & Opportunity Project
c/o Mary Beth Roach
P.O. Box 2000
Charlottetown, PEI C1A 7N8
Tel.: (902) 368-6153
Fax: (902) 368-6706
E-mail: mbroach@ihis.org