By Carli Friedman, CQL Director of Research
People with intellectual and developmental disabilities (IDD) with higher support needs often face service disparities. As a result, they often have fewer opportunities and lower quality of life compared to those people with IDD without higher support needs. This study conducted by CQL | The Council on Quality and Leadership had two aims. Our first aim was to explore disparities in personal quality of life outcomes for people with higher support needs. Our second aim was to examine how organizations can promote the quality of life of people with higher support needs. To explore these aims, we analyzed Personal Outcome Measures® interviews from 1,341 people with IDD.
Our findings revealed, compared to people without higher support needs, people with higher support needs faced disparities in not only personal outcomes, but also organizational supports (see figure).
Disparities in Outcomes and Supports for People with Higher Support Needs
In addition, when we examined differences across each individual area of quality of life, we found that people with higher support needs had disparities in 18 of the 21 different outcomes compared to people without higher support needs.
We believe these disparities are largely attributed to the fact that people with higher support needs also received fewer organizational supports than people without higher support needs. In fact, people with higher support needs had disparities in 16 different organizational supports compared to people without higher support needs. The figure below highlights just a handful of those 16 disparities in supports. For example, while 64.0% of people without higher support needs received individualized organizational supports to live in integrated environments, only 34.6% of people with higher support needs received organizational supports to do so. “While providers cannot necessarily control people’s personal outcomes, they do have control over if, and how, they support people with higher support needs” (Friedman, 2020, p. 520).
Disparities in Different Supports: A Selection
“These disparities relate to inadequate supports for people, a lack of systemic infrastructure, and negative perceptions about people with severe impairment’s abilities… By paying attention to person-centered outcomes, including these disparities for people with higher support needs, organizations’ roles can shift from just service providers to supporting people to achieve the outcomes that are important to them” (Friedman, 2020, p. 522).
This article is a summary of the following journal manuscript: Friedman, C. (2020). Quality of life outcome and support disparities among people with more severe impairments. Intellectual and Developmental Disabilities, 58(6), 513-524. https://doi.org/10.1352/1934-9556-58.6.513