Trauma is an Access Issue.

Created
Mar 23, 2021 09:31 PM
Last edited
May 16, 2021 12:46 AM
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trauma

Implementing Universal Design in Trauma Services

Erin Basler, original draft - 20 September 2020, updated 16 December 2020.
Info & TOC

Introduction

University survivor services frequently support all community members who have experienced interpersonal, power-based violence. This may include serving: current undergraduate and graduate students, staff members, faculty, alumni, partners and family members.
Survivor constituents may:
  • range in age from late adolescence through later life
  • have perpetrated or experienced violence
  • seek support for recent acute trauma, a resurgence of triggers and trauma symptoms, or managing retraumatization
  • have co-occurring and intersecting sources of trauma — personal, interpersonal, community-wide, and systemic
In examining the impacts of trauma - somatically, psychologically, and neurobiologically, and the breadth of potential clients, best practices in trauma healing could be blended with universal design principles to create services that fully support trauma survivors through recovery and beyond.
Using Universal Design Principles and Trauma-informed Practices, as well as practical experience with creating accommodations in trauma services, this work examines the need for a blended series of best practices for trauma-informed design.  Surveying universal and inclusive Design Principles - as used in physical, virtual, and learning environments — and trauma-informed practices will provide a set of theoretical and practical guidelines for the website’s design, structure, and supporting documentation, as well as a framework for developing accessible services for a wider array of the community members.
Data from the Association of American Universities (AAU) report on students’ experiences of intimate harm showed the university in alignment with national statistics regarding sexual and intimate partner violence, identifying trans and gender non-conforming, LGB, and disabled students as having a higher risk of victimization, providing crossover to other types identity-based support initiatives. In recent years, the National Institutes for Health (NIH) have published studies supporting “universal trauma precautions” in healthcare settings, citing trauma as a common life experience (SAMHSA, 2014). With the current domestic and global climates of uncertainty, isolation, and fear of death - whether by institutional violence or disease - one can assume the need for trauma-informed and accessible, inclusive services will rise significantly over the near future.

Trauma is an Access Issue.

Trauma is broadly defined as the pervasive impact of traumatic events on one’s overall wellbeing (SAMHSA, 2012). From a somatic perspective, “trauma is an experience, series of experiences, and/or impacts from social conditions that break or betray our inherent need for safety, belonging, and dignity” (Haines, 74). Traumatic events can occur individually (e.g. Acquired Brain Injury), interpersonally (e.g. Intimate Harm), community-wide (e.g. Police Brutality and Protests) or globally (e.g. a Pandemic) (SAMHSA, 2014). Exposure to trauma may cause Acute Stress Disorder (ASD), which without treatment or with further trauma exposure, can develop into Post Traumatic Stress Disorder (PTSD) (DSM-5, 2013).
While much of the research into the effects of PTSD has focused on members of the military and primarily men who have been in active combat zones, newer research has begun to probe the impacts of different types of trauma in a variety of settings and demographics, with much attention paid to the role of white supremacy in undergirding systems of intimate harm, racial violence, resource scarcity, and secondary trauma, which impacts caregivers and other professionals who support those with trauma (e.g. Domestic and Sexual Violence (DSV) counselors, hospice nurses). With these types of trauma exposure, development of gradually-developing PTSD (e.g. increasing emotional abuse in the context of a relationship) is more likely than lasting, pervasive trauma from a single event (e.g. a car accident); with cumulative and repeated adverse events compounding the effects of stress and fear, leading to CPTSD. Additionally, advances in neurobiology have shown concrete effects of trauma on the brain’s structure and function as well as long-term impacts on neurochemical and hormone levels.
Prolonged and pervasive trauma exposure leads to physical and psychological consequences that require consideration when developing services for survivors.
Research has shown prolonged stimulation of the Hypothalamic-Pituitary-Adrenal (HPA) Axis, which controls how we respond to stressful, life-threatening, and terrifying experiences can lead to disability. Commonly, this series of interactions within the HPA Axis is our threat response - fight or flight (NIH, 2011). In the short term, this response is designed to arouse the systems that are required to defend ourselves: more blood circulates to the lungs and muscles; increased cortisol, adrenaline, and norepinephrine (stimulant stress hormones); reduce inflammation and suppress immune system function, and; higher dopamine production to dull pain sensitivity.
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Fight and Flight are not the only types of threat responses. People may also exhibit tonic immobility (Freeze), collapsed immobility (Flop), or compliance or appeasement to increase safety (Fawn).
Long-term trauma and stress exposure can significantly impact physical health, psychological well-being, and brain function. Trauma can significantly impact cognition, specifically causing functional disruption within the prefrontal cortex, impairing sequencing, attention, and memory (Bremner, 2006). Prolonged trauma exposure has shown shrinking in the hypothalamus, reduced neuron activity,  and functioning issues that mimic Traumatic Brain Injury (Snipes, 2017). Over time, trauma significantly impacts endocrine function through:
  • heightened levels of cortisol can lead to hypocortisolism leading to fatigue
  • suppressed immune function
  • lowered distress tolerance, including higher sensitivity to pain reduced levels of serotonin and dopamine
  • reduced receptor sensitivity for GABA, creating difficulty with emotional regulation, specifically regarding anxiety
  • excitotoxic levels of  glutamate, which impacts learning and memory
Haines discusses two components of trauma, from a somatic perspective, at play in the experience of trauma. The first is the excitatory physiological response that leads to immediate action (i.e. fight, flight, freeze, appease, and dissociate) and correlating repair response, at which point one will follow the physiological chain through or suppress it. Trauma exposure itself does not directly lead to PTSD: many factors can increase resilience and reduce the likelihood of long-term impacts (SAMHSA,2014). However, as more segments of the population experience cumulative societal, interpersonal, and personal stressors, there will be increased need for services that incorporate both trauma-informed principles and universal design into an array of services, particularly in the case of services for survivors of domestic and sexual violence.

Core Principles

With deeper understanding of the effects and rates of trauma exposure, professionals developed Principles for Preventing PTSD and providing Trauma-Informed Care. The Principles address what somatic trauma healers view as the primary psychological injury leading to ASD and PTSD: a loss of safety, belonging, and dignity (Haines, 133). These principles reflect the importance of information sharing, respecting autonomy, and empowering the person who has experienced trauma in promoting safety, belonging and dignity.

PTSD Prevention

  1. Promote a sense of safety
  1. Promote calmness
  1. Promote a sense of personal and collective efficacy
  1. Promote connectedness
  1. Instilling Hope (SAMHSA, 2014)

Trauma Informed Care

  1. Safety
  1. Trustworthiness & Transparency
  1. Peer Support
  1. Collaboration & Mutuality
  1. Empowerment: Voice & Choice
  1. Context-Aware services (CDC)
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This principle is referred to as Cultural, Historical, and Gender Issues in the cited literature. I use context-aware in recognition that there are a number of identities and memberships that can shift how one views the experience of trauma and how it impacts the survivor.

These themes are echoed in Universal Design Principles in that they aim to support access, efficacy, and autonomy through structural (or systemic or informational) means - core components to achieving safety, empowerment, and hope in trauma work. Universal Design has been translated to many disciplines, the following have implications for trauma services: Universal Design Principles (UDP), Universal Design for Learning (UDL), and The Paciello Group’s Inclusive Design Principles (IDP) for UX.

Universal Design Principles

  1. Equitable Use
  1. Flexibility in Use
  1. Simple and Intuitive Use
  1. Perceptible Information
  1. Tolerance for Error
  1. Low Physical Effort
  1. Size & Approach for Use. (NCSU, 1997)
 

Universal Design for Learning

  1. Provide Multiple means of representation (the What of learning)
  1. Provide Multiple means of expression (the How of learning)
  1. Provide multiple means of engagement (the Why of learning)(CAST, 2018)

Inclusive Design Principles for UX

  1. Provide a comparable experience
  1. Consider Situation
  1. Be Consistent
  1. Give Control
  1. Offer choice
  1. Prioritize Content
  1. Add value (Swan, et. al.)

Blending the Principles

These principles can be used to support trauma survivors in reestablishing safety, belonging, and dignity. Collectively, they provide methods for addressing the impacts of trauma through Universal Design. While individual  principles don’t apply to each core area, safety, dignity, and belonging are addressed in each set of principles: PTSD Prevention, Trauma-Informed Care, Universal Design, Universal Design for Learning, and Inclusive Design for UX.
To help illustrate how these principles could be implemented, I will use case examples from my experience as a DSV services provider. In my position, I was the primary point of contact for the agency tasked with investigating abuse of people with disabilities. Frequently, supported agency staff members in identifying and implementing accommodation strategies.

Promoting Safety

Safety is simultaneously a simple concept and a complex one. Some view it as reliable access to resources, the absence of violence, or protection from harm. Toward the purpose of blending the varied principles into the concept of safety, we will use this definition of safety: “a state in which one is able to be both secure and vulnerable, authentic without fear that this vulnerability will be used against them” (Haines, 136).
Establishing safety is the first principle in PTSD prevention and trauma-informed care. In safety planning, a tool used by trauma-workers to develop strategies to increase safety and reduce risk of violence, would benefit from implementing a number of UD Principles. Because we know how traumatic events impact cognition and physical response, finding solutions that take into account those barriers. Providing strategies informed by Universal Design removes significant load from an already overloaded brain.  One tool used by DSV services that could be enhanced through Universal Design is Safety Planning.
Safety planning focuses on proactively identifying practical strategies for increasing safety based on the context and needs of the client. Many safety planning tools provide thought prompts, create preparatory lists, and identify barriers that need to be considered or mitigated. Universal Design in safety planning may include alternative formats.
Trauma exposure can impact memory and attention. Most safety planning tools are physical, written lists that require the client to brainstorm  solutions. To promote equitable use, the tool could be moved into a digital format, paired with a glossary and Picture Exchange Communication Systems (PECS), with video explanations of the prompt with a list of examples. In the new format, clients could use a screen reader, gain or deepen understanding through PECS, and find the meaning of unfamiliar terms without navigating away from the tool itself.
An audio explanation can communicate the reason behind certain considerations in safety planning and makes sense to connect with a list of examples. The prompt, “Where can you keep a copy of your important documents,” matters because resources are hard to access without ID. Examples help show the breadth of options. One client may know they can hide important documents in a certain pair of shoes: one may have a trusted supporter that will keep them until they are needed: one may bring them to work. Examples promote flexibility and increase choice.

Promoting Belonging

Belonging is the sense that our authentic experiences are “dignified, discovered over time, known by others, and belong in the ‘we’” (Haines, 140). At its core Universal Design is about creating environments that are inclusive of the broadest range of abilities and experiences. In DSV Services, physical access is a barrier to services. In 2017, MA DPH added contract stipulations requiring all new services and programs needed to be ADA compliant, including shelters. At the time, there were fewer than 10 accessible beds in the entire state for those experiencing DSV and seeking safe housing. Not having access to safety based on physical access shows that one does not belong.
When my agency moved into a new building, we were able to custom-build a portion of the interior with a general contractor who “was familiar with” accessibility guidelines. While the space was “Compliant,” there were a number of choices made during the build and in arranging furniture that were exclusionary. The hinge on the door was opposite the end of the ramp, meaning one has to pull the door across their body and walk around it to gain access to the building. The first thing a client sees upon entering the space is a chest height counter, behind which the welcoming staff sit at a standard height desk. Staff can see who is entering the building because they have a security camera, but many people, specifically those with an eyeline below 4ft high, entering the building would be left with the impression that they are walking into an empty office.
The counter is technically compliant because there is a shorter counter on the back side of the cube - through the door that separates the lobby from offices. It also sends the message to disabled people, children, short people, and many others that the space was not made for them: their needs were not even realized, never mind considered. The countertop is still chest high because it also contains custom-sized bullet-proof glass and has a set of outlets built into it at the 3’ mark. If UDP had been part of the design process, we may have had a conversation about the message a chest height wall and bullet-proof glass sends to those coming through our front door.

Promoting Dignity

Dignity is each person’s inherent worthiness and value, underpinning basic human rights like access, autonomy, and efficacy.  All of the principles mentioned above: Universal Design, UD for Learning, Inclusive Design for UX, PTSD Prevention, and Trauma-Informed Care promote dignity by increasing choice and supporting empowerment. Implementing UD, especially in service design, allows clients to determine their own healing path. Unfortunately, services providers may increase barriers while trying to maintain compliance and confidentiality.
In this case, a multiply-disabled woman had been sexually assaulted by a neighbor in her assisted living community. She had a history of physical, emotional, and sexual trauma, and was adjusting to life with significant physical impairments, including using a wheelchair, after an accident. At the client’s request, the protective services case manager helped coordinate the initial appointment at our agency. Through the two meetings our staff had with this client, it was clear some of our processes did not work in the way we intended and caused significant barriers for the client. She came in with a set of accommodation strategies to support her memory (note taking), maintain calm (fidget objects and chocolates), and brought supporting documentation to help with explaining her concerns.
From the perspective of our agency, it highlighted a number of ways our processes could be streamlined to support ease of access, specifically around use and tolerance for error.
At the time, our agency did not have processes in place for working with people who use care providers and case coordinators. Interdepartmental processes weren’t transparent, meaning staff didn’t identify some support needs. An unexpected issue surrounded the client’s belief that the police were harassing her, a critical point missed in early interdepartmental communication. In connecting the client to police advocacy, we failed to realize that the advocate's number showed as being from the police department on Caller ID. The case coordinator repeatedly reached out to our agency to schedule an appointment for the client. Because agency staff were unfamiliar with how to work with case coordinators, the client was almost discharged from services for not returning the scheduler’s phone calls.
In the end, our agency was able to work with the client and the case coordinator, but the process showed many ways we could improve the system to be more easily navigable by users with a broad spectrum of needs. These issues are not inherent to one agency. They permeate intimate harm services. Statistically, disabled people carry a higher risk of interpersonal and intimate harm (Shapiro, 2017), and that trauma exposure can increase acquired disability. Trauma support services should investigate how to blend Universal Design Principles with the standard practices of Trauma-Informed Care and PTSD Prevention to increase access to services for all users.

The role of transparency

Transparency, in this case, is sharing what you know and admitting when you don't know or cannot share the information. Transparency requires a willingness to be vulnerable. Service providers and the systems they uphold frequently frame a lack of transparency as a guard against liability. However, a lack of transparency could also be a sign of overly complex system methods, confusion about processes, or a lack of knowledge on the part of a provider. In some cases, systems continue to operate as they always have, and our culture, knowledge, and expectations have shifted around them.
The misperception that transparency means eschewing individual privacy stunts efforts for increased access to information. For example, activism around sexual harassment on campus has, in each iteration, requested increased transparency on the part of administrators. In this case, some want full transparency of proceedings, which unequivocally jeopardizes the privacy, safety, and autonomy of those involved. However, many advocating for change are asking for transparency in process — a clear, known, and established set of procedures that are reviewed and interrogated to maintain their goal: providing remediation and closure for those involved.
Trauma informed practice requires us to demystify the policies, procedures, and processes constituents are expected to navigate — all of which are informed by the experiences of those most impacted by trauma and marginalization. Universal design provides a path to developing systems and practices that recognize how constraints broadly constrict access and remediating them proactively.

References

American Psychiatric Association. (2013). Anxiety Disorders. In Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596.dsm05
Bremner J.D. Traumatic stress: Effects on the brain. Dialogues Clin. Neurosci. 2006;8:445–461. Accessed 9/5/2020: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181836
CAST (2018). Universal Design for Learning Guidelines version 2.2. Retrieved from http://udlguidelines.cast.org
Centers for Disease Control Office of Public Health Preparedness and Response. [Infographic, n.d.].  6 guiding principles to a trauma-informed approach. Accessed 9/17/2020: https://www.cdc.gov/cpr/infographics/00_docs/TRAINING_EMERGENCY_RESPONDERS_FINAL.pdf
Haines, S. (2019). The politics of trauma: Somatics, healing, and social justice. Berkeley, CA: North Atlantic Books.
Snipes, D. (2017, March 7). Neurobiological impact of psychological trauma on the HPA-axis [Webinar]. AllCEUs Counseling Education. Accessed 9/19/2020: https://youtu.be/qLxgQdxedL4
Substance Abuse and Mental Health Services Administration. Trauma-Informed Care in Behavioral Health Services. Treatment Improvement Protocol (TIP) Series 57. HHS Publication No. (SMA) 13-4801. Rockville, MD: Substance Abuse and Mental Health Services Administration, 2014. Accessed 9/18/2020: https://store.samhsa.gov/product/TIP-57-Trauma-Informed-Care-in-Behavioral-Health-Services/SMA14-4816
Substance Abuse and Mental Health Services Administration. SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach. HHS Publication No. (SMA) 14-4884. Rockville, MD: Substance Abuse and Mental Health Services Administration, 2014. Accessed 9/15/2020: https://ncsacw.samhsa.gov/userfiles/files/SAMHSA_Trauma.pdf
Swan, H. Pouncey, I. Pickering, H. Watson, L. (n.d.) Inclusive design Principles. [Website]. Accessed on 9/13/2020: https://inclusivedesignprinciples.org/