By Carli Friedman, CQL Director of Research
People with disabilities are living longer than ever before due to social and medical changes, such as deinstitutionalization, inclusion, improvement in medical care, and an increase of rights. Yet, there is little research about the quality of life of older adults with disabilities who have higher support needs. This is particularly problematic not only because this population will continue to grow in number, but also because older adults with disabilities with higher support needs have unique experiences and support needs. For these reasons, the aim of this study conducted by CQL | The Council on Quality and Leadership was to explore the quality of life of older adults with disabilities with higher support needs. To do so, we analyzed Personal Outcome Measures® data from approximately 800 older adults with higher support needs.
Findings from our study revealed the majority of older adults with higher support needs had fewer than half of the possible 21 personal outcomes. In addition, while most people had outcomes present related to health and safety present, many were lacking in choice and opportunities, relationships, and community integration.
We also explored the organizational supports older adults with higher support needs had in place to help facilitate their personal outcomes. Our findings revealed many participants were not receiving a lot of organizational supports – participants had an average of 11 out of the 21 organizational supports in place (see figure).
Organizational Supports Present: Older Adults with Higher Support Needs
Additional analyses revealed that the lack of personal outcomes older adults with higher support needs had was largely due to the lack of organizational supports they received, suggesting an influx of organizational supports is needed for this population to help promote their quality of life. “As a result of advances in not only medical care and health services but also societal changes, people with [high support needs] are living longer than ever before. While this presents us with new opportunities to support people with [high support needs], it also will challenge the service system in new and profound ways” (Friedman, 2019, p. 247).
This article is a summary of the following journal manuscript: Friedman, C. (2019). Quality-of-life outcomes of older adults with severe disabilities. Research and Practice for Persons with Severe Disabilities, 44(4), 237-250. https://doi.org/10.1177/1540796919879227