A quality of life (QOL) measure that helps articulate an individual’s, wishes, hopes and dreams is a critically needed tool to help service providers move away from a deficit based assessment system that creates goals, perhaps unimportant to the individual, towards a person-centered planning system that helps to truly understand what is important to individuals and creates pathways to self-determination. People living with an intellectual or developmental disability are often without the supports required to meet their individual goals and needs. Compounding this problem is that organizations are not yet equipped to assess what those needs and wishes are from a person-centered framework.
Measuring QOL and understanding what is important to an individual means that organizations will improve the likelihood that a person is living a self-determined life. Increasing self-determination and understanding what a person values and wants from their life through work, recreation, learning and living is critical to health for individuals with disabilities. Wehmeyer (2005) defined self-determination as intentional behaviors or choices that allow an individual to be the “primary causal agent in one’s life and to maintain or improve one’s quality of life”.
As the state of Illinois moves toward person centered planning that aims to increase quality of life for individuals with disabilities, assessing quality of life through a measure that has shown to effectively capture the areas impacted becomes important. It is no longer sufficient to assure that an individual is safe and in an engaging program. Agencies must understand the ways in which an individual wishes to live their life, the way they define quality and the programs that will support the implementation of their hopes and dreams. In order to do so, organizations must be trained on assessment of QOL through the use of tools whose purpose it is to determine a person’s wishes, hopes and dreams.
The Council on Quality and Leadership (CQL) has for over twenty years been asking its accredited organizations to measure quality of life in the development of a person centered plan through collecting Personal Outcome Measures (POM). Focusing on My Self, My World and My Dreams the POM measures 21 factors of a person’s life assessing whether outcomes such as social networks, opportunities for employment and choice in living (for example) to create a plan that will help people realize their goals. “Instead of looking at the quality of how the services are being delivered, Personal Outcome Measures look at whether the services and supports are having the desired results or outcomes that matter to the person” (CQL, 2016). The evidence to support this tools validity and reliability has been determined through the collection of data nation-wide over twenty years.
PACTT Learning Center will coordinate these trainings on behalf of the partners serving as liaison between CQL, partners in the project as well as members of the Department of Human Services. The project will engage CQL for thirteen 4-day training sessions on the use of Personal Outcome Measures that aim to fully understand quality of life for individuals served by organizations. PACTT Learning Center in partnership with ten members of the Intersect for Ability Consortium as well as three other partner organizations is working to enhance the capacity of over 150 workers (Agency, ISC and State employees) to assess quality of life for the members of their organizations all of whom are individuals with an intellectual or developmental disability.
Training on the POM tool will allow providers to use the personal outcome measures to assess quality of life and participant goals within their own organizations. The state of Illinois is in the midst of transitioning to person centered care, making training on POM essential for keeping providers in line with state requirements. This investment in person centered care and planning by the state will ensure that trained providers and agencies continue to collect quality of life measures that fully capture the way in which agencies need to support the individuals they serve to help them meet their goals.