By Carli Friedman, CQL Director of Research
The cause of so-called ‘challenging’ behavior is often environmental and multidimensional. Behavior events may be caused by people with intellectual and developmental disabilities (IDD) having undiagnosed or untreated health conditions, being abused or neglected, experiencing trauma, or needs not being met (De Winter et al., 2011; Gentile, 2019; Poppes et al., 2010). Sometimes this behavior is because people have a lack of opportunities, or a lack of experiences, or are not treated with dignity and respect (Friedman, 2018, 2021; Poppes et al., 2010).
Many of the factors which may cause behavior events are also social determinants of health. Social determinants of health are “conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks” (United States Office of Disease Prevention and Health Promotion, n.d., n.p.).
Despite the fact that many social determinants of health overlap with the factors that cause behavior events, less research has examined the relationship between social determinants of health and behavior events of people with IDD; the aim of this study was to do so. We analyzed the relationship between behavior events, and Social Determinant of Health Index outcomes from Personal Outcome Measures® interviews from 251 people with IDD. In our analysis, we controlled for participant demographics (i.e., age; complex medical support needs; gender; intellectual disability clinical diagnosis level; primary method of communication; race; and residence type.)
Social Determinant Outcomes & Behavior Events
Our analysis found Social Determinants of Health Index outcomes were a significant predictor of behavior events. For every one increase in social determinant outcomes present, there was a 22.69% decrease in behavior events. For example, controlling for all demographics, someone with one social determinant of health outcome present is expected to have 0.27 behavior events, whereas someone with four outcomes present is expected to have 0.13 behavior events.
The Relationship Between Social Determinants of Health Outcomes and Behavior Events
Implications for Practice
Our study found the number of behavior events people with IDD exhibited decreased when they had more outcomes present, particularly those outcomes which are social determinants (e.g., community integration, social roles, employment, where one lives, rights and rights restrictions, respect, continuity and security, health and safety). In fact, behavior may be a way of signaling one is lacking in those outcomes related to social determinants – behavior that is deemed ‘challenging’ in, and of, itself may be an indicator of the presence, or lack thereof, of social determinants.
Behavior events should not be seen as something ‘wrong’ with the person or just something the person does, instead alternative causes should be investigated. Our findings suggest many people with IDD who are exhibiting behavior that is considered ‘challenging’ may simply need supports to help promote their social determinant related outcomes. One way providers can do so is by recognizing that communication comes in many forms, and people who do not use words to communicate still communicate. Support staff would likely benefit from more training about communication techniques to use with those people who communicate without words.
When someone is having difficulty self-regulating behavior, it is also important for providers to examine if the person is experiencing undiagnosed or untreated medical or psychological conditions, or if the person is safe. Providers should also examine if the behavior is a form of coping. For example, people with IDD may be experiencing stress, anxiety, or trauma which is causing them to behave in the way they are.
People with IDD may also be frustrated due to a lack of control over their lives, a lack of opportunities, rights violations, and/or a lack of continuity and security. Providers should explore rights, due process, and community integration accordingly. Do people with IDD have fulfilling activities, opportunities, and relationships, including ones of their choosing? Are staff presuming competence and promoting dignity of risk? Is there a focus on promoting self-determination, empowerment, and informed decision-making?
People’s continuity and security is also impacted by the rapid turnover of direct support staff. Support staff turnover can result in people’s needs not being met because of a lack of consistent staff, and the new staff having less experience and training. People may also be participating in behavior events because they miss the support staff they built relationships with, and/or they are uncomfortable with their new support staff.
Reducing Behavior Events
Our findings suggest that by paying attention to social determinants of health and by facilitating those outcomes related to community integration, choice, social roles, rights, work, continuity and security, respect, and safety, there will be a significant reduction in behavior events. Perhaps those behavior events are simply a way for people with IDD to indicate a lack of health and quality of life in the first place – after all, behavior is communication.
• De Winter, C., Jansen, A., & Evenhuis, H. (2011). Physical conditions and challenging behaviour in people with intellectual disability: a systematic review. Journal of Intellectual Disability Research, 55(7), 675-698. https://doi.org/10.1111/j.1365-2788.2011.01390.x
• Friedman, C. (2018). R-E-S-P-E-C-T: The relationship between being respected and quality of life of people with disabilities. Disability Studies Quarterly, 38(2). https://doi.org/10.18061/dsq.v38i2.6168
• Friedman, C. (2021). Reducing ‘challenging’ behavior by training support staff to promote dignity and respect. Journal of Developmental & Physical Disabilities, 33(3), 449–458. https://doi.org/10.1007/s10882-020-09757-7
• Gentile, J. P. (2019, October 23). Trauma informed care in intellectual disability: Four keys to success [Conference session]. The Council on Quality and Leadership Conference, Baltimore, MD.
• Poppes, P., Van der Putten, A., & Vlaskamp, C. (2010). Frequency and severity of challenging behaviour in people with profound intellectual and multiple disabilities. Research in Developmental Disabilities, 31(6), 1269-1275. https://doi.org/10.1016/j.ridd.2010.07.017
• United States Office of Disease Prevention and Health Promotion. (n.d.). Social determinants of health. Author. https://www.healthypeople.gov/2020/topics-objectives/topic/social-determinants-of-health