A new take on Quality of Life
Quality of life is something we all take for granted in our lives. This is no different for people who have a developmental disability. Recognizing this, CLBC is leading a quality of life demonstration project in the Fraser Region in which self-advocates will interview other self-advocates who are receiving supports and services about their quality of life. Knowing this information is important for many reasons. For example, it can help a service provider know what they can do to improve their approach. This is known as continuous quality improvement.
The quality of life framework being used in the demonstration project was developed by Dr. Robert Schalock in the late 1980s. His framework, which has been used and validated internationally over the past two decades, is represented by eight domains:
- Emotional well-being: contentment, self-concept, lack of stress.
- Interpersonal relations: interactions, relationships, supports.
- Material well-being: financial status, employment, housing.
- Personal development: education, personal competence, performance.
- Physical well-being: health and health care, activities of daily living, leisure.
- Self-determination: autonomy, personal control, personal goals, choices.
- Social inclusion: community integration and participation, roles, supports.
- Rights: legal, human, respect, dignity, equality.
Together, these domains provide an indication of an individual’s quality of life in three broad areas: independence, social participation, and well-being. This fits well with CLBC’s overall vision of good lives in welcoming communities. Another advantage of Dr. Schalock’s framework is that it applies equally to all people – it does not presume a two-tiered approach to quality of life in which people with developmental disabilities have a different standard than others.
Over the past two years, the Persons with Developmental Disabilities (PDD) Edmonton Region Community Board has worked closely with Dr. Schalock to establish a valid, reliable way to assess and monitor the quality of life of individuals with developmental disabilities. Through this process, they have developed a valid questionnaire that can be reliably implemented by surveyors, including self-advocates, who are trained to use the tool. Service providers who participated in the Alberta pilot study have reported that the information they gained from this process has helped them to clearly identify the strengths of their organizations and areas that can be improved. CLBC has negotiated a licensing agreement with PDD Edmonton that will allow free use of their materials in order to replicate their work.
There are seven participating service providers in the CLBC Fraser region demonstration project: Burnaby Association for Community Inclusion, Langley Association for Community Living, Milieu Family Services, H.O.M.E.S., Community Living Society, Community Integration Services Society and Semiahmoo House Society. Self-advocates will be trained as paid interviewers. Research demonstrates that self-advocates are as reliable as surveyors as those who do not have a disability. Interview questions will be in plain language with words and icons used for responses.
In early May, Dr. Schalock shared information about the quality of life framework including how it was developed, where it is being used throughout the world, and the positive impact it has already had within the community living field.
Beginning in the fall, training for self-advocate surveyors will take place and the interview survey will be field tested. During the winter and spring of 2010 and 2011, a total of 300 interviews will be conducted. An evaluation of the data will help to determine next steps for how quality of life might be used in the province.
The project is guided by a reference group that includes CLBC staff, and groups representing self-advocates, families and service providers. To date, the project has met with real excitement from everyone involved. Service providers will play key roles by engaging in project problem solving and being part of as a “learn as we go” process of change.
As Maryjo Gariano, a PDD surveyor from Alberta has commented, “It’s not just another form to fill out. It’s a form with meaning. You are capturing the essence of someone’s life.”
