Running head: SYSTEMIC ENGAGEMENT AND TREATMENT OUTCOMES

Systemic Engagement: Intervention that Fosters Treatment Outcomes Among Individuals Diagnosed with IDD and Co-Occuring Psychiatric Disorders.

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Abstract

The purpose of this study will be to investigate the impact of a new tool, the Systemic Treatment Plan, on the outcomes of the treatment of individuals diagnosed with Intellectual and Developmental Disorders (IDD) and co-occurring mental/behavioral health conditions. This tool is used to more clearly organize, articulate, and measure systemic goals for each individual served. The researcher hypothesizes that using the Systemic Treatment Plan will improve systemic engagement, result in more rapid systems change, and result in less emergency service use. Data will be collected from a previous study conducted using this tool where two clinicians’ (of equivalent skill level) caseloads were selected for comparison. One clinician was trained and coached in using the Systemic Treatment Plan and one was not. Random sampling was used to identify the treatment group which received systemic engagagement in treatment versus the control group. Use of this tool was the independent variable. The dependent variable included: 1) service outcome data from a large agency database (i.e., use of crisis response and other emergency services); 2) pre- and post- ABC scores; 3) pre- and post- RSQ scores; and 4) completion of a systemic satisfaction survey at the end of the experimental period. Data analysis from this study included T-test parametric inferential statistics but this proposed study will be analyzing the data using Multivariate analysis of variance (MANOVA) analysis which will be calculated using the Statistical Package for the Social Sciences (SPSS), as well as quality data from the satisfaction survey.

Introduction

People diagnosed withIDD are a diverse group of individuals diagnosed with severe chronic conditions that are based on mental and or physical impairments. These impairments begin at any point during and individual’s development up to 22 years of age and are present for the rest of the person’s life. There is strong evidence to show that disruptive, dangerous, life-threatening, inappropriate, and socially undesirable behaviors by individuals with IDD present major difficulties for family, peers, and other community relationships (Harvey, Boer, Meyer & Evans, 2009). These behaviors tend to be fueled by deficiencies in major life activities such as language, mobility, learning, self-help, and independent living. A combination of these factors leads this vulnerable population to not only become underserved based on their heightened need for care, but also isolated from social support systems due to frequent behavioral challenges. Generally, individuals diagnosed with IDD receive less emotional support and companionship from family members and friends in comparison to individuals that do not have the IDD diagnosis (Rosen & Burchard, 1990). These relationships are crucial in fostering emotional well-being; but due to this gap, individuals with IDD end up receiving much of their support through paid professionals. Hence, the paid professional relationship does have an impact upon the emotional well-being of the individual diagnosed with IDD (Lunsky & Benson, 1999).

Throughout the United States, there are a number of community mental health centers that have programs that cater to individuals diagnosed with IDD and co-occuring disorders. These programs are structure-specific to not only the geographic location, but also available supplemental resources. Despite this, there is a deficiency of treatment strategies for prople diagnosed with intellectual disabilities that utilize systemic engagement.

National Center for Systemic Therapeutic Assessment and Treatment (START) Services spearheaded systemic engagement in treatment planning. First developed and implemented in Massachusetts in 1989, START uses what has been coined as a ‘systems linkage approach’ to service delivery cited by the U.S. Surgeon General’s report as a model that helps overcome disparities in access to mental health care (Charlot & Beasley, 2013). The core philosophy is that there must be an emphasis on solution focused, active communication and decision-making in the system of care, in addition to a better understanding of individual clinical and treatment needs in order to improve service outcomes (Beasley, Weigle & Klein, 2016). START is a best practice, evidence-informed, tertiary care program and community network that enhances capacity toward effective supports for individuals with Intellectual and Developmental Disabilities (IDD) and behavioral health needs. Throughout its lifespan, this program has revealed promising outcomes that include significant reduction in emergency service use as well as improvements in service experiences (Beasley, 2002).

There is extensive data from prior research and recent findings on the positive relationship between the emotional well-being of individuals diagnosed with IDD and the amount of contact or engagement they have with their social support system but despite this, there is still a lack of awareness, recognition and implimentation of these important relationships. Additionally, there are also some gaps in the lack of coordinated care and crisis prevention strategies amongst individuals diagnosed with IDD and this has been shown to have profound impacts on families and other relational dynamics (Krahn, Hammond & Turner, 2006). This proposed study aims at taking an in depth look at these dynamics and how their interrelational aspects affect goal attainment in regards to treatment outcomes.

Statement of the Problem/Scope

The IDD diagnosis is common. According to the Center for Disease Control (2015), about 1 in 6 children in the U.S. had an IDD diagnosis between the year 2006 and 2008. In addition, researchers from the Health Resources and Services Administration (HRSA) in collaboration with the Centers for Disease Control and Prevention (CDC) conducted a 12-year study and determined a prevalence of developmental disabilities in the United States. Data from this study showed that prevalence of this chronic condition increased 17.1% from 1997 to 2008. That’s about 1.8 million more children with IDD between the year 2006 and 2008 compared to a decade earlier (Boyle, Boulet, Schieve, Cohen, Blumberg, Yeargin-Allsopp, Visser & Kogan, 2011). Even though this study’s main focus was on children, it clearly shows that the rates of IDD diagnosis were and are still on the rise which only underscores the increasing need for integrated services and more specialized care for people diagnosed with IDD.

The treatment for people diagnosed with IDD is challenging based on the neurological nature of the condition as well as the complexities of symptoms. Both challenging behaviours (aggression, destructiveness and self-injury) and psychiatric disorders (anxiety, depression, mania and psychosis) are commonplace amongst people with intellectual disability (Allen, Langthorne, Tonge, Emerson, McGill, Fletcher & Kennedy, 2013). Even though there is behavioral interventions present such as ongoing therapy and medical interventions such as psychotropic medications, individuals diagnosed with IDD still struggle to maintain stability from challenging behaviors. Currently, psychotropic medication is the most typical intervention provided for challenging behaviours (Fleming, Caine, Ahmed & Smith, 1996; Harper and Wadsworth, 1993; Kennedy and Meyer, 1998). This is mainly accessed once the behaviors have become unbearable and the individual is sent to an inpatient or outpatient psychiatric hospital for treatment, which is a common practice. Kalb, Beasley, Klein, Hinton & Charlot (2016) described the prevalence of psychiatric hospitalization services among individuals diagnosed with IDD in a study of 3299 individuals with IDD (mean age= 31 years; SD=14 years) and found that 28% of the sample had at least one psychiatric inpatient stay in the prior year of the study.