Positive Approaches Journal, Volume 12, Issue 1
Murray, Layton, Logan | 46-59
Volume 12 ► Issue 1 ► May 2023
Lessons from the Community: The Critical Importance of Lived Experience When Designing Trauma Recovery Programs.
Michael Murray, Andrea Layton, and Jeanne Logan
This article reviews the importance of community engagement when designing clinical interventions and supports. This is especially timely given the need for enhanced trauma recovery and resilience building needs for the neurodivergent community following the increased awareness of the victimization/traumatization risks for autistic, intellectually disabled, and/or developmentally disabled individuals as well as the universal traumatic exposure resulting from the COVID-19 pandemic. Guiding principles for effective community engagement are reviewed. The four key activities of the community coalition action theory are reviewed and demonstrated by discussions of two recent Autism Services, Education, Resources and Training collaborative (ASERT) projects—TRAIN and Project ECHO.
Public health concerns are increasing in scope and impact. COVID-19 was a global event with universal range—everyone was truly impacted to some degree. There has not been such a universal trauma exposure in our lifetimes. Despite this there were positive outcomes resulting from the pandemic. One of these has been the emphasis on community engagement as we struggle to expand access to quality care, prevent disease, and achieve greater health equity. As clinicians and investigators, we are being increasingly encouraged to engage key stakeholders when designing health promotion programs and interventions. But what does this really mean? What is the community to be considered and what constitutes engagement? The Centers for Disease Control (CDC) defines community engagement as “the process of working collaboratively with groups of people who are affiliated by geographic proximity, special interests, or similar situation with respect to issues affecting their well-being.”1
When the ASERT collaborative became interested in addressing trauma recovery needs for our community members, it was clear that all of the elements that the CDC definition reference were present as the team started to contemplate this work: a group of people affiliated by proximity (Pennsylvania), special interest (trauma risk reduction and more effective intervention) and similar situation (members of the neurodivergent community) that affects health and well-being. What was not as obvious was how to best engage this community.
The concept of community engagement has expanded. Key stakeholders—especially those with lived experience—have critical information to share for outreach, education, and intervention efforts. Furthermore, lived experiences should be considered central to the design of these efforts. Successful engagement strategies can range from highly structured and formalized to grassroots level led coalitions, but the most successful enable sustained and committed engagement among partners working on well-defined goals with actionable strategy. In 2022, the National Academy of Medicine published a report from their national workgroup aimed at identifying best practices for community engagement in health care programs and policies.2 In this report, core principles for fully engaged community participation in design and execution of policy and practice were identified. They included: trust; bi-directionality; inclusiveness; culturally-centeredness; and equitably financed. These core principles promote multi-knowledge and informed projects with shared governance.
Butterfoss and Kegler describe four key activities in their community coalition action theory widely considered to be one of the strongest models for promoting inclusive and sustained community engagement:3
1. Know the community: This is the intelligence gathering phase where the history, experiences, and capabilities of key stakeholders are gathered and integrated. Identifying and understanding needs develops collectively.
2. Establish positions and strategies: Active attention and support from shared engaged leadership leads to identification of goals and key activities. This needs to occur within the structural capacity of the partners where existing limitations need to be recognized. Long-term intentions and openness to change resulting from community input needs to be clearly communicated on an ongoing basis as needs and experiences change so may overarching priorities.
3. Build and sustain networks: Leadership should seek communication opportunities with those within the network as well as other aligned stakeholders outside of the network. This communication should occur formally and informally so as to promote free exchange of information and perspectives. Existing network structure (communication efficacy, shared power, and resource flow) should be analyzed and modified to meet ongoing needs. Communication and resource allocations should target and leverage agenda-setting priorities for the larger community for greatest sustainability.
4. Mobilize constituencies: Earning and re-earning trust is an ongoing process in efforts to maintain commitment and engagement from all parties. Cyclically moving through process of dialog, debate, and decision-making achieves greatest ongoing commitment to what should be constantly evolving collaborative goals.
With this framework and guiding principles in mind, the ASERT Collaborative utilized a community engagement approach when designing and implementing two new initiatives aimed at responding to the growing need for neurodivergent-informed trauma resources.
Issue 1: The critical gap of qualified therapists equipped to offer evidence-based treatment for the growing number of neurodivergent individuals coming forward with their experienced trauma.
According to the most recently available Pennsylvania Adult Protective Services (APS) report for fiscal year 2020-21, there were 15,249 reports of abuse, neglect, exploitation or abandonment with 7,082 of these reports ultimately being substantiated.4 Of course, this figure does not represent all of the victimization experiences and there are many other types of trauma—both past and present—which are not victimizations or reportable under APS guidelines.
In 2018, the Office of Developmental Programs’ (ODP) Information Sharing and Advisory Committee (ISAC) discussed the growing awareness of the high vulnerability for victimization and trauma exposures for neurodivergent individuals. The ASERT team initially responded by partnering with state Milestone Health Care Quality Unit (HCQU); Temple Institute on Disabilities (Temple IoD); Office of Developmental Programs (ODP) and national partners (National Crime Violence Research and Treatment Center at the Medical University of South Carolina) to create a resource collection aimed at reducing risk (prevention strategies) and informing stakeholders what good care should look like (intervention strategies). Additional information can be found at www.PAAutism.org/BeSafe. But it became apparent during subsequent conversations with ISAC and other community stakeholders that the lack of treatment options for individuals after they disclosed their victimization and trauma experiences was a significant barrier. Essentially the good evidence-based care that the resource collection described was difficult to access.
This led to next stage of this project—training therapists to modify evidence-based treatment for trauma recovery to meet the needs of neurodivergent individuals. In addition to partners already mentioned, the ASERT team determined it would be critical to incorporate as much lived experience perspective into this training as possible. This led to partnering with Self Advocates United as 1 (SAU-1) during the development of the training topics and content. Self Advocates United as 1 Power Coaches shared their victimization and/or trauma experiences, past ineffective treatment, and successful treatment experiences. Some Power Coaches agreed to being filmed while discussing these topics and this material was incorporated into the training materials providing powerful context for training concepts.
Trauma Recovery for Autistic, Intellectually disabled, and Neurodivergent individuals (TRAIN) consists of two components: a 12-week didactic portion of asynchronous webinars and synchronous clinical skills application workshops and a 12-week clinical consultation portion where trainees present a clinical case of a neurodivergent individual they are working with which provides an opportunity for the cohort to offer insights and feedback creating a strong learning collaborative. Lived experience from the SAU-1 Power Coaches and the case discussions pervades all aspects of this project. Thirty-three therapists have completed TRAIN to date and have come from both urban and rural areas from across the Commonwealth.
Community Coalition Action review for TRAIN
1. Know the community: ASERT has extensive experience engaging key stakeholder groups in the neurodivergent community. Early partners increased access to provider perspectives. Self Advocates United as 1—the critical community partner—provided feedback on topics, materials, and enriched TRAIN with lived experience perspectives.
2. Establish positions and strategies: Partners determined that increasing evidence-based therapy access for victimized and traumatized neurodivergent individuals was a high priority. While addressing the needs of non-speaking neurodivergent individuals is important, to do so will require exceptional clinical skills as the therapists will need to be well versed in evidence-based trauma recovery and augmentative/alternative communication strategies. The partners elected to initially focus on neurodivergent individuals with good expressive language skills so as to reduce therapist burden and increase buy-in for this effort. However, feedback from community members (including therapists who have completed TRAIN) indicate increased recognition of the need to better support non-speaking neurodivergent individuals—this has influenced the next development of the TRAIN project which will focus on individuals with significant cognitive and/or communication challenges.
3. Build and sustain networks: Information from the TRAIN project has been shared in a variety of ODP sponsored networks including newsletters and listservs as well as presentations at the Everyday Lives Dual Diagnosis Conference, the Residential Learning Collaborative, and the Pennsylvania Autism Training Conference. Past TRAIN participants have shared their experiences in testimonials and with colleagues. Subsequent cohorts of TRAIN participants have become easier to recruit reflecting greater awareness and interest in the project.
4. Mobilize constituencies: Collaboration with SAU-1 and other key community partners remain active as new directions for the work are considered leading to overall goal of increased capacity for evidence-based trauma recovery for neurodivergent individuals at all levels of disability in every county.
Issue 2: Combatting the high direct and indirect consequences of the pandemic for the neurodivergent community.
As mentioned previously, COVID-19 caused universal trauma exposure. The neurodivergent community was at particular risk due to heightened risks for morbidity and mortality during the initial phase of the pandemic; disruptions in highly relied upon community resources to provide stability and sense of well-being; isolation from loved ones leading to mental health challenges; and struggles adjusting to frequently changing “new normal.”2 Moreover, this population which is already at high risk for victimization and adverse life events may have experienced trauma directly related to the pandemic and mandated containment measures—including stay-at-home orders resulting in isolation and lack of services. They may have also experienced exacerbation of pre-exiting or unresolved trauma issues.
Fostering resilience is of critical importance in enhancing adaptive stress responses. Some resilience needs are universal; individuals who had been at home for months are now re-engaging with their communities at some level. Other resilience needs are more specific to an individual’s lived experience; for instance, one of the consequences of the previous stay-at-home orders is that some individuals were “trapped’ with individuals who have abused/victimized them in some way currently or in the past. This prolonged exposure, especially without opportunity for escape, is of high concern for individuals at risk especially for those who may rely on distraction and external supports as means of coping with trauma.
The Community Resilience Model (CRM) seeks to create social networks of community members mutually supporting each other through chronic stress and/or trauma exposures. This is a skills-based approach aimed at stabilization of physiological stress responses. An additional focus of CRM is to create “trauma-informed” and “resilience-focused” communities. The CRM was highlighted in the United Nations Common Guidance on Helping Build Resilient Societies guide.5
The ASERT Collaborative engaged community partners to explore how CRM could be adapted to meet the needs of the neurodivergent community in these unprecedented times. Stakeholders included representatives from the Office of Developmental Programs and Office of Mental Health and Substance Abuse Services in the project formation phase. Key stakeholder mapping was conducted with input from self-advocacy agencies (SAU-1 and the Acres Project); family members/natural supports of neurodivergent individuals; and professionals who support neurodivergent individuals including direct support professionals and licensed/managerial professionals. These were the four target stakeholder groups for this effort.
The initial effort for this project was a Project ECHO © clinic aimed at licensed professionals who supervise direct support professionals and neurodivergent individuals. Project ECHO (Extension for Community Healthcare Options) is a hub and spoke model where “all teach and all learn” in a collaborative environment based largely on case-based learning. Project ECHO has been demonstrated to be an effective means of building skills for community service providers working with neurodivergent individuals.6,7 This particular series focuses on trauma and stress responses in neurodivergent individuals. Brief lectures provide an overview of the CRM as well as adaptations which may be helpful for neurodivergent individuals. The main thrust of the sessions come from participants who present de-identified cases to each other and the specialist team in order to gain confidence and competence in providing evidence-based supports to increase resilience for neurodivergent adults.
The “hub team” consists of individuals from a variety of backgrounds with content expertise—the hub team for this effort include community providers, an autistic adult, and members of the ASERT clinical team. The “spokes” consist of community health care providers—in this case community-based service providers supporting neurodivergent individuals. To date, 32 community providers have participated in the Fostering Resilience for Neurodiverse Communities ECHO series.
Community Coalition Action review for ECHO
1. Know the community: ASERT has extensive experience engaging key stakeholder groups in the neurodivergent community. The ECHO team at Penn State University brought additional expertise in marketing and recruiting participants. Self Advocates United as 1and the Acres Project provided feedback on topics, materials, and enriched with lived experience perspectives.
2. Establish positions and strategies: Partners determined that increasing evidence-based community approaches for building resilience was of key importance and achieving buy-in from managers and supervisors at community agencies was an important first step. Project ECHO’s emphasis on case-based learning and wide inclusion/diversity of the hub team members are in alignment with the principle of incorporating lived experience to promote optimal outcomes. Materials are in development which will cover the same material in self-paced online learning experiences allowing the other targeted stakeholders to access the materials in ways and times which are optimal for them. A true community-based approach can be achieved where all key stakeholders share the same information and support one another.
3. Build and sustain networks: Information from the ECHO project has been shared in a variety of ODP sponsored networks including newsletters and listservs as well as presentations at the Everyday Lives Dual Diagnosis Conference, and ODP Capacity Building Institute. Past ECHO participants have shared their experiences in testimonials and with colleagues. Subsequent cohorts of ECHO participants have become easier to recruit reflecting greater awareness and interest in the project.
4. Mobilize constituencies: Collaboration with SAU-1, Acres Project and other key community partners remain active as new directions for the work are considered leading to overall goal of increased capacity for evidence-based trauma resilience building for neurodivergent individuals at all levels of disability. Access to new materials on the learning platforms and ECHO updates will help to sustain active engagement.
Community engagement requires time, effort, and careful consideration. It is an active and dynamic process which necessitates careful planning and continual reassessment. Community partners need to make effort to understand the unique perspectives and powerful lived experience that each can provide. True community engagement where partners are truly sharing in the governance of the work has the potential to create powerful and immediately impactful work. The ASERT Collaborative’s recent experience with the TRAIN and ECHO projects are testament to this.
The research and development phase of TRAIN was funded by PA Department of Human Services, Office of Development Programs Money Follows the Person (MFP) funding. The implementation phase of TRAIN receives ASERT funding and support.
Project ECHO: Fostering Resilience is funded by the PA Department of Human Services, Office of Development Programs Money Follows the Person (MFP) funding.
1. Centers for Disease Control and Prevention Principles of community engagement (1st ed ) Atlanta (GA): CDC/ATSDR Committee on Community Engagement; 1997
2. National Academy of Medicine: Organizing Committee for Assessing Meaningful Community Engagement in Health & Health Care Programs & Policies. 2022. Assessing Meaningful Community Engagement: A Conceptual Model to Advance Health Equity through Transformed Systems for Health. NAM Perspectives. Commentary, National Academy of Medicine, Washington, DC. https://doi.org/10.31478/202202c
3. Butterfoss FD, Kegler MC. The community coalition action theory. In: DiClemente RJ, Crosby RA, Kegler MC (editors). Emerging theories in health promotion practice and research (2nd ed., pp. 237-276). San Franc cisco: Jossey-Bass; 2009.
4. Pennsylvania Department of Human Services, Office of Developmental Programs, ADULT PROTECTIVE SERVICES (APS) ANNUAL REPORT Fiscal Year 2020-2021; https://www.dhs.pa.gov/about/Fraud-And-Abuse/Documents/APS-Annua_Report_FY_20-21.pdf
5. United Nations (2020), United Nations Common Guidance on Helping Build Resilient Societies, New York (UN) https://unsdg.un.org/sites/default/files/2021-09/UN-Resilience-Guidance-Final-Sept.pdf
6. Dreiling, N. G., Cook, M. L., Lamarche, E., & Klinger, L. G. (2021). Mental health project echo autism: Increasing access to community mental health services for autistic individuals. Autism, 26(2), 434–445. https://doi.org/ 10.1177/13623613211028000
7. Komaromy, M., Ceballos, V., Zurawski, A. et al. Extension for Community Healthcare Outcomes (ECHO): a new model for community health worker training and support. J Public Health Pol 39, 203–216 (2018). https://doi.org/10.1057/ s41271-017-0114-8
Michael Murray is a board-certified child and adolescent psychiatrist. He is the director of the Division of Autism Service at Penn State College of Medicine and the medical director of the Autism and Developmental Disabilities Clinic for Penn State Health. He is the director of the Central Region ASERT collaborative.
Andrea Layton is a board-certified behavior analyst. She is the assistant director for the Central Region ASERT collaborative. She directs the ASERT training, communication, and outreach missions.
Jeanne Logan is certified registered nurse practitioner. She is the associate clinical director for the Division of Autism Services for Penn State Health.
Penn State College of Medicine
Department of Psychiatry and Behavioral Health
Division of Autism Services
Central Region ASERT Collaborative
Penn State College of Medicine
Department of Psychiatry and Behavioral Health
Division of Autism Services
Central Region ASERT Collaborative
Penn State Health
Certified Nurse Practitioner717-531-8338