By Carli Friedman, CQL Director of Research
According to CQL’s Basic Assurances® self-management of health refers to “people receiving supports being involved in their own healthcare, including decisions about healthcare providers and the services they receive… all people receiving supports should be afforded the same choices in healthcare available to others.” Self-management of health “at its core is about people with [disabilities] having control over their health at both a small scale (e.g., making their own appointments), and a large scale (e.g., treatment decisions)… Currently, in the United States, disability service organizations tend to do things for people when it comes to healthcare, instead of helping the person to do them, because of agency liability – they over support because of risk. Organizations are likely worried about increased liability if the person ignores doctors’ orders… The best support involves balancing duty of care and dignity of risk. It is the organization’s responsibility to support the person to understand the risks and benefits to reduce this risk, rather than take away their choices altogether” (Friedman, Rizzolo, & Spassiani, 2018, pp. 6-7).
The aim of this study conducted by CQL | The Council on Quality and Leadership was to explore the self-management of health by people with intellectual and developmental disabilities (IDD). To do so, we conducted an analysis of 1,300 Personal Outcome Measures® interviews with people with IDD.
According to our findings, regardless of impairment severity, people who self-managed their health were 2.81 times more likely to have health care professionals identify their best possible health situation, including addressing their health care issues, concerns, and/or interventions (see figures). Compared to people not supported to self-manage their health, those who did were 7.37 times more likely to select their health intervention services in consultation with their health care professional. People supported to self-manage their health were 2.30 times more likely to have effective health intervention services compared to those not supported to self-manage their health.
Odds: Health Care Professionals Identified Best Possible Health Situation, Addressing Any Issues or Concerns and Interventions
Odds: Health Intervention Services Selected
By The Person in Consultation with the Health Care Professional
Odds: Health Intervention Services Have Been Effective
Our findings suggest the impact of self-management of health can be wide-ranging – there are many benefits regardless of people’s impairment severity. Because of the benefits of self-management of health, it is important that organizations attend to disparities in who is supported to self-manage their health. Service organizations can implement a number of low-cost options to help promote the self-management of health by people with IDD. Not only does self-management of health center the person in decisions about their healthcare, it also can lead to improvements in health behaviors, self-efficacy, and health. Moreover, “the engagement aspect of self-management of health can also lead to more efficient health care delivery. Self-management of health represents a paradigm shift for people with IDD because it transforms them from passive recipients to active directors of their own health” (Friedman et al., 2018, p. 18).