A COMPREHENSIVE ASSESSMENT OF CRISIS IN INDIVIDUALS WITH INTELLECTUAL DISABILITIES AND ITS IMPLICATIONS FOR PHYSICAL THERAPY

Abstract

OF DISSERTATION A COMPREHENSIVE ASSESSMENT OF CRISIS IN INDIVIDUALS WITH INTELLECTUAL DISABILITIES AND ITS IMPLICATIONS FOR PHYSICAL THERAPY Advancements in medicine, policy, and societal attitudes have improved life expectancy, socialization, and participation for individuals with intellectual and developmental disabilities (IDD). However, inconsistent or a lack of services may drive healthcare utilization toward expensive emergency care services. This can negatively impact health outcomes and disrupt physical therapy treatment plans, limiting their effectiveness and further placing individuals with IDD at risk for crisis episodes. Because of its subjective nature, quantifying crisis is challenging using current definitions. Rehabilitation professionals are often active members of the care team for individuals with IDD, however no evidence currently exists regarding how the profession can positively impact crisis intervention. Because these clinicians often develop long-term relationships with patients and work with them on a consistent basis, they are well-positioned to recognize early signs of crisis and make timely referrals to the appropriate health and social service providers but currently lack resources to guide in this decision-making. A better understanding of characteristics of this population related to crisis is needed in order to develop accessible and useful screening tools and to improve clinical reasoning. The purpose of this dissertation was to identify pertinent risk factors related to crisis for individuals with IDD using a novel, objective crisis definition. Using a mixed methods approach, a revised definition of crisis was developed through surveying of expert clinicians and healthcare administrators at a specialty care clinic for individuals with IDD. The addition of four crisis-related events were included in the definition: (1) unplanned hospital utilization; (2) involvement with the criminal justice system; (3) abuse/victimization; (4) unplanned change in living environment. Using retrospective chart review, these four crisis-related events were further analyzed and validated by comparing their occurrence in patients who did (N=41) and did not (N=144) receive formal crisis intervention services at the clinic between January 1, 2014 and March 1, 2019. The risk for unplanned hospital utilization was 3.4 times higher for crisis patients. The risk for involvement with the police or criminal justice system was 13.86 times higher for crisis patients. The risk for abuse and/or victimization was 6.21 times higher for crisis patients. The risk for unplanned change(s) in living environment was 12.7 times higher for crisis patients. Overall, 90% of crisis patients experienced at least one of the four crisis-related events during the study period, compared to 54.2% of non-crisis patients. Five additional risk factors were identified that increased crisis risk: hypothyroidism, bipolar disorder, intermittent explosive disorder, personality disorder, and have multiple psychiatric disorders. No statistically significant differences were found between crisis and non-crisis patients for intellectual disability severity level, mobility status, communication status, neurodevelopmental diagnosis, age, race/ethnicity, or living environment. To the best of our knowledge, the identification of hypothyroidism as a potential crisis risk factor was a novel discovery not previously reported in the literature. The findings of this dissertation have multiple implications for clinical practice and add to the body of knowledge regarding crisis experiences for individuals with IDD. First and foremost, over a fifth of our study sample (22%) utilized formal crisis management services during the study period. This suggests that crisis episodes are common in the IDD population. As the majority of individuals with IDD are community-dwelling and life expectancy continues to increase, the likelihood of physical therapists encountering adults with IDD in clinical practice will subsequently increase. However, physical therapists and physical therapy students routinely report feeling unconfident and uncomfortable treating individuals with disabilities, including individuals with IDD. There is a need, then, to improve clinician confidence and skills to ensure that individuals with IDD receive optimal care, especially into adulthood. The findings of these studies provide foundational knowledge and point toward trends in crisis experiences that can help guide physical therapists and other rehabilitation clinicians.