By Carli Friedman, CQL Director of Research
Quality of life tools are particularly useful to demonstrate the effectiveness of disability services and programs. However, it is crucial for quality of life instruments to keep up with the sociopolitical advances made by people with disabilities, as well as changes in disability service systems. For this reason, the purpose of this study conducted by CQL | The Council on Quality and Leadership was to re-validate the Personal Outcome Measures®, a comprehensive measure that examines person centered quality of life and organizational supports that promote those outcomes.
The Personal Outcome Measures® has been revised a number of times based on findings from focus groups, feedback from content experts, factor analyses, and research (see figure). This study analyzed data from approximately 1,500 people with disabilities using a Principal Components Analysis (PCA) to determine the underlying structure of the Personal Outcome Measures® as well as if any indicators needed to be removed.
Findings revealed the 21 indicators loaded onto five new factors: My Human Security; My Community; My Relationships; My Choices; and My Goals.
My Human Security
“Human Security includes essential non-negotiable human and civil rights. In our definition, we invoke the United Nations (UN) concept which ‘link[s] various humanitarian, economic, and social issues in order to alleviate human suffering and assure security;’ human security ‘encompasses human rights, good governance, access to education and health care and ensuring that each individual has opportunities and choices to fulfill his or her potential’” (Friedman, 2017, p. 5).
People with disabilities “have a right to be in the community, to access and interact with the world around them… The Personal Outcome Measures® recognizes the difference between community access and community integration, with the latter being the ultimate goal. While the characteristics of community may vary depending on personal preferences, as with all people, people who receive supports are integral community members, and should be supported to fulfill multiple social roles in the community” (Friedman, 2017, p. 5).
“Relationships, be they with biological or chosen family, friends, or romantic partners, produce a sense of belonging. Relationships are personally defined, ranging from who one chooses to share information with, to a deep level of intimacy and familiarity. The Personal Outcome Measures® notes relationship are links to the greater world that create a blanket of security, and help people who receive supports play social roles” (Friedman, 2017, p. 5).
“Choice is the ability to make decisions that affect one’s life and community. Central to choice are self-determination, participation, and autonomy. Organizations must accommodate peoples’ preferences so they can get what they want and need” (Friedman, 2017, p. 5).
“Goals reflect aims for the future, including direction, dreams, and aspirations. While goals do not need to be realistic or achievable, they do need to be person-centered. Goals not only rely on participant direction and person-centered philosophy to ensure people are truly working towards goals of their choosing, but for many people with disabilities, this factor requires opportunity. There are often lower expectations for people with disabilities because of prejudicial attitudes, low expectations, and exaggeration of difference. Equity of opportunity requires people with disabilities not only be supported, especially to reduce systemic barriers, but also, if they are to truly have equal opportunities, they must have the opportunity to take risks” (Friedman, 2017, p. 5).
This validation revealed a number of changes from the previous 2nd edition. The factors not only went from three (My Self, My World, My Dreams) to five, but the indicators were also largely reorganized across the five new factors. We believe these updates reflect changes in the lives of people with disabilities. For example, deinstitutionalization of people with intellectual and developmental disabilities continues to increase thanks to advocacy from people with disabilities and their families, and systems changes. Together, these five factors, and the 21 indicators they comprise, represent a comprehensive tool that can be utilized to maximize the quality of life of people with disabilities.
This article is a summary of the following journal manuscript: Friedman, C. (2018). The personal outcome measures®. Disability and health journal, 11(3), 351-358. https://doi.org/10.1016/j.dhjo.2017.12.003
CQL Personal Outcome Measures® Validation Report
This report details the update to the reliability and validity of the Personal Outcome Measures® (POM). Based on advanced statistical analyses, our 2017 revised edition of the Personal Outcome Measures® contains 21 indicators organized into five factors.Get The Report