By Carli Friedman, CQL Director of Research
The number of people with intellectual and developmental disabilities (IDD) who live in institutions has been rapidly decreasing since its peak in 1967 (Braddock et al., 2015). This shift is a result of advocacy efforts by people with IDD and their families, improved outcomes and cost-effectiveness in community settings, and litigation and civil rights laws. Yet, despite more favorable outcomes in the community, people with IDD still struggle to be meaningfully included in and engaged with the community, in large part because of the lack of an adequate community infrastructure. For these reasons, the aim of this study was to examine the relationship between quality of life outcomes and residential settings. To do so, we analyzed Personal Outcome Measures® interviews from approximately 1,350 people with IDD.
Findings revealed significant differences across settings in the following quality of life areas: human security, community, relationships, and choices (see figure below).
Difference in Outcome By Residential Setting
For example, regardless of their impairment severity, people who lived in their own homes and family homes had better community outcomes (use their environments, live in integrated environments, interact with other members of the community, and participate in the life of the community) than people who lived in provider-owned or -operated homes, state-operated HCBS group homes, or intermediate care facilities for people with developmental disabilities (ICFDD). Although outside of the scope of this research summary, we also explored differences in personal outcomes based in different residential settings based on peoples’ impairment severity; for more regarding this analysis, see the full manuscript.
Taken all together, our findings suggest that while people with IDD have predominantly relocated to the community, this move has largely become a physical move rather than true community integration. While our findings revealed individual homes and family homes continue to be the gold standard in terms of quality of life outcomes, findings also revealed a lack of statistically significant differences between provider-owned or -operated homes and ICFDD. While we do not mean to suggest that there is no difference between community-based settings and institutional ones – there are decades of research indicating the positive benefits of community living, including for people with more severe impairments – our findings do suggest that ‘deinstitutionalization’ may be better reframed as ‘transinstitutionalization.’ Transinstitutionalization refers to the systemic shift from one type of institutional setting to another. Community-based settings that maintain the structure, rules, and culture of outdated custodial care models can very often be “‘institutions without walls’… [as] these settings frequently hold the same prejudicial assumptions as institutions about the dependency and abilities of people with IDD, and do not respect the rights of people with IDD… Although much of this standardization and inflexibility is due to a lack of workforce stability and limited financial resources, a systemic overhaul of long-term services and supports (LTSS) is needed to detach from traditional custodial congregate care models by removing institutional biases, expanding funding for community-based LTSS to build up a proper community infrastructure, supporting family members, and changing the culture of most providers, all of which will result in an increased quality of life of people with IDD” (Friedman, 2019, pp. 121-123).
- Braddock, D., Hemp, R., Rizzolo, M. C., Tanis, E. S., Haffer, L., & Wu, J. (2015). The state of the states in intellectual and developmental disabilities: Emerging from the great recession (10th ed.). Washington, DC: The American Association on Intellectual and Developmental Disabilities.
- Friedman, C. (2019). The influence of residence type on personal outcomes. Intellectual and Developmental Disabilities, 57(2), 112-126. https://doi.org/10.1352/1934-9556-57.2.112
Deinstitutionalization or Transinstitutionalization?: Residence Type, Personal Outcomes, and People with IDD