2021:  A Big Year in the Literature on Trauma and IDD

If there was ever any doubt that the IDD field is recognizing the critical importance of trauma, three brand new articles in the academic literature have put that to rest. They are all scoping reviews which summarize the professional literature on a particular topic and attempt to synthesize the current state of knowledge.

It was stunning that JUST as we launched the Pilot Trauma-Informed Care Learning Collaborative for IDD Organizations, these three articles appeared in my inbox. And, as you will see, the findings strongly support the rationale underlying trauma-informed care (TIC) culture change for organizations in the IDD sector.

Here is a summary of key points and implications regarding the first article. Future posts will discuss the other two articles:

Article 1 of 3: Trauma, Intellectual and/or Developmental Disability, and Multiple, Complex Needs: A Scoping Review of the Literature 

 Key Points

• People with IDD experience significant health disparities and are at increased risk of exposure to trauma and other adverse life events, which are linked to negative health outcomes
  
  
• The Substance Abuse and Mental Health Services Administration (SAMHSA) describes 10 TIC Implementation Domains that are important to address when organizations are implementing TIC. They include: Governance and Leadership; Policy; Physical Environment; Engagement and Involvement; Cross Sector Collaboration; Screening, Assessment, Treatment Services; Training and Workforce Development; Progress Monitoring/Quality Assurance; Financing; and Evaluation
  
  
• In reviewing the current literature with respect to how relevant articles fit within the 10 domains, IDD services have generally failed to consider: Governance & Leadership; Physical Environment; Progress Monitoring/Quality Assurance; Financing; and Evaluation
  
  
• Research around trauma and trauma-informed care has largely focused on making change at an individual versus organizational or systems level. Implementing a trauma-informed framework involves recognizing and responding to the effects of trauma not just in persons served, but in the staff and across the entirety of the organization. Focusing on the ‘individual’ has the effect of making the problem and the solution about the person and not the systems/structures in which they are embedded. For trauma-informed systems to be sustainable, a cultural shift at an organizational level is needed

Implications for the Field

This is the first article that reviews the literature about trauma and IDD with the expressed purpose of examining the existing knowledge and knowledge gaps. It is also unique in that it uses a framework related trauma-informed care (TIC) specifically. While articles about trauma are limited compared to other topics in the IDD literature, articles about TIC and IDD are even rarer.

This article exposes readers in the IDD field to the foundational framework established by SAMHSA describing the many and varied domains in an organization that are involved when implementing TIC (10 described by SAMHSA). Many organizations believe that, after doing a few staff trauma trainings or referring trauma survivors with IDD to mental health services or training a clinician in a particular trauma therapy, they ARE a trauma-informed organization. But TIC by definition is a system-wide approach that impacts all parts of the organization – its “organizational DNA."

The article demonstrates that there is very little literature that addresses more than a few of the 10 SAMHSA domains. In other words, the field does not yet recognize the need to change the organizational culture that includes things like leadership practices, policy, training, funding, moment-to-moment interactions between DSPs and people they support, and mental health treatment to name only some of the areas.

The IDD field’s focus on changing individuals–and not systems–risks further blaming of the individual for lack of progress, for example, rather than recognizing that organizational systems and service systems play an important role in healing and healthy functioning. Without deliberate attention to trauma-sensitive care, organizations can often unwittingly enact harsh, punitive, and controlling practices that re-traumatize survivors with IDD.

Furthermore, especially because there is such a scarcity of mental health services–including trauma treatment–for people with IDD generally, IDD organizations must foster program milieus that are healing in and of themselves. These milieus place a priority on building healing relationships that contradict survivors' experiences of being hurt in the past.

Citation

Cook, S. & Hole, R. (2021). Trauma, intellectual and/or developmental disability, and multiple, complex needs: a scoping review of the literature. Research in Developmental Disabilities.