By Carli Friedman, CQL Director of Research
The institutionalization of people with disabilities peaked in 1967, with dramatic increases in community living ever since (Braddock et al., 2015). For example, between 1997 and 2007, there was a 70% decrease in institutional living of people with intellectual and developmental disabilities (Rizzolo, Friedman, Lulinski-Norris, & Braddock, 2013). Not only is community living preferred by people with disabilities, research has found that compared to institutional settings, community living results in increases in participation, self-determination, choice, and adaptive skills (Larson, Lakin, & Hill, 2013). Yet, our data system, PORTAL, reveals only 41.6% of people with disabilities in our sample of approximately 1,400 people live in integrated environments (outcome present).
People Live In Integrated Environments is a quality of life indicator within the factor My Community, of CQL’s Personal Outcome Measures®. It involves where people receiving supports live, work, and spend their leisure time, along with how they interact and connect to those spaces and the people in them. This indicator goes beyond just physical integration, and explores opportunities for people to build social capital in their community, alongside people both with and without disabilities.
Out of community-based settings, people in family homes and their own homes were most likely to have the outcome present for live in integrated environments. People in provider homes and state operated group homes were the least likely to live in integrated environments.
Live In Integrated Environments: Community-Based Setting
Our findings also revealed that the most extensive amount of services are necessary for those who have higher support needs, and complex disabilities. People with higher support needs were less likely to live in integrated environments than people with fewer hours of average daily support. Moreover, people with complex medical needs and comprehensive behavioral support needs were also less likely to live in integrated environments compared to people without these needs. With the right supports, all people are able to live in integrated environments.
Live In Integrated Environments: Supports
The Impact of Organizational Supports
In fact, our research has found organizational supports can facilitate integrated living monumentally. People with disabilities are:
- 9 times more likely to live in integrated environments when services and supports for the person promote opportunities for integration in the community.
- 17 times more likely to live in integrated environments when the organization knows what integration means to the person, or there are efforts being made to learn about the person’s preferences.
- 32 times more likely to live in integrated environments when services and supports for the person promote opportunities for integration at home.
- 84 times more likely to live in integrated environments when integrated environments organizational supports are in place.
People with disabilities who live integrated environments are significantly more likely to have higher total outcomes scores across the 21 indicators – better quality of life. Despite tremendous advances in the community living of people with disabilities, and an increased number of community-based services and supports, people with disabilities continue to struggle to be meaningfully included in the community (Cullen et al., 1995; Friedman & Spassiani, 2017).
With the proper individualized organizational supports we can work to ensure people with disabilities are not only physically located in the community but meaningfully engaged with it as well.
- 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. Washington, DC: The American Association on Intellectual and Developmental Disabilities.
- Cullen, C., Whoriskey, M., Mackenzie, K., Mitchell, W., Ralston, K., Shreeve, S., & Stanley, A. (1995). The effects of deinstitutionalization on adults with learning disabilities. Journal of Intellectual Disability Research, 39(6), 484-494.
- Friedman, C., & Spassiani, N. A. (2017). Getting out there: Community support services for people with intellectual and developmental disabilities in Medicaid HCBS Waivers. Inclusion, 5(1), 33-44.
- Larson, S., Lakin, C., & Hill, S. (2013). Behavioral outcomes of moving from institutional to community living for people with intellectual and developmental disabilities: U.S. studies from 1977 to 2010. Research and Practice for Persons with Severe Disabilities, 37(4), 235-246. doi:10.2511/027494813805327287
- Rizzolo, M. C., Friedman, C., Lulinski-Norris, A., & Braddock, D. (2013). Home and Community Based Services (HCBS) Waivers: A nationwide study of the states. Intellectual and Developmental Disabilities, 51(1), 1-21. doi:10.1352/1934-9556-51.01.001