Posted on August 27, 2020

By Katherine Dunbar, CQL Vice President of Services and Systems Excellence

Horrifying stories of people with disabilities being abused or neglected happen far too often. Statistics vary somewhat depending on the source and the type of abuse or neglect, but one study found more than 70% of people with disabilities reported being abused (Disability & Abuse Project, 2013). Considering this only includes reported cases, can you imagine the percentage of unreported? That is staggering.

What can agencies do to provide better supports to people? What type of prevention techniques should people receiving supports and their supporters use? What are the risk factors so we can mitigate them? How can we use a trauma-informed approach to support people?

We all know most of the risk factors for abuse, neglect, mistreatment, and exploitation (ANME). As you’ll read in this newsletter, ‘flipping’ these risk factors can present some good prevention technique.

Common Risk Factors of Abuse, Neglect, Mistreatment, and Exploitation

• poor quality health care
• minimal access or restricted access to essential services (especially abuse hotlines or domestic violence services)
• history of ANME
• social isolation
• inadequate housing
• social stereotypes of vulnerability and lack of credibility
• higher support needs
• smaller social networks
• unemployment
• low self-esteem (Araten-Bergman et al., 2017; Keesler, 2014, 2018)

Another risk factor involves people having a lack of power due to few opportunities to make decisions in their own lives (Wigham & Emerson, 2015). Some examples include deciding who assists them – especially with personal care – where they live, who their room/housemates are, what the routines are, and what they do during the day. All of these (and more) are contributing factors to increased risk of ANME.

Principles of Trauma-Informed Care

According to the Substance Abuse and Mental Health Services Administration (SAMHSA; 2014), “a program, organization, or system that is trauma-informed realizes the widespread impact of trauma and understands potential paths for recovery; recognizes the signs and symptoms of trauma…, and responds by fully integrating knowledge about trauma into policies, procedures, and practices and seeks to actively resist re-traumatization.” The six key principles of a trauma-informed approach are: safety; trustworthiness and transparency; peer support; collaboration and mutuality; empowerment, voice and choice; and, cultural, historical, and gender issues (SAMHSA, 2014).

There has been a lot of research using Trauma-Informed Care in the disabilities field, but it is not as prevalent as it could be. In this article, we do not intend to write in detail about the theory and practice, but the importance of using this approach to prevent ANME.

Prevention of ANME all relates to the culture of the agency. How do you create a culture of compassion, tolerance, learning, and empathy?

Prevention Tips of Abuse, Neglect, Mistreatment, and Exploitation

• Create and support a culture of respect and dignity. Organizations should listen, respond with compassion, and actively engage all stakeholders.
• According to research, staff who support people with disabilities often have a history of trauma (Araten-Bergman et al., 2017; Keesler, 2014, 2018). Use a Trauma-Informed Care approach to management and support.
• Recognize that a staff or person supported may not tell you that they have a history of trauma. Using a Trauma-Informed approach helps create a culture of supporting all people across the organization.
• Ensure managers have a frequent, active presence and are engaging with:
  • Routines of the service provision
  • Staff supporting people
  • People receiving services
  • Staff and people receiving services where services are provided
• Teamwork is critical for a positive culture. When all team members share the organizational values and share the responsibility of upholding those values, the power structure shifts to one that is more positive.
• All members of the organization MUST see that people with disabilities are valued members and are treated with dignity and respect.
• All members of the organization also must see that everyone in the organizational structure have contributions to make to the organizational mission.
• Respect people’s differences. Everyone has a talent that can be brought to the team. Use those talents to bring people together.
• Value relationships that are compassionate, warm, and considerate and do not tolerate those relationships that are not.
• Encourage staff autonomy and allow staff the flexibility to manage their time according to what the person supported wants and needs.
• Ensure people are not living in isolation. Even during a pandemic keeping in touch with others is possible (and essential) with the use of Zoom, Google Duo, Facetime, and many other digital applications.
• Ensure people receiving services have power and control over all facets of their lives. They should be setting the routines, choosing staff and housemates, where they live, etc. Having someone else control these gives a sense of helplessness. People who have this control or more likely to speak up about abuse.
• Educate people supported. Organization should not just teach definitions of ANME, but really teach people that is not okay to be abused or neglected—by staff, housemates, friends—anyone.
• Share stories. Make sure that people know that ANME has happened and will keep happening if we do not prevent it. We know that when people share their stories, it has a higher impact than just a PowerPoint presentation or stating statistics.
• Look beyond specific “trauma treatment interventions” (though valuable) to also focus on the person’s environment (their living situation and those in it) as a source of healing (post‐ trauma) and a source for protective resources to reduce the impact of adverse events (pre‐trauma).
• When someone (whether staff or people supported) is struggling, start with the premise that they are coping in the most effective way they know. For example, if a staff member begins showing up late, approach the staff in a compassionate way and work with them on a plan to solve the problem. Instead of punishing staff (enforcement), working with them stresses the partnership aspect of the relationship.
• Organizations should also have a culture of being accepting of change and new ideas. Listen to people outside the organization and use what others have learned to consistently enhance quality. Interact with families, vendors, staff from other parts of the organization, and local communities.

References and Resources

• Araten-Bergman, T., Bigby, C., & Ritchie, G. (2017). Literature review of best practice supports in disability services for the prevention of abuse of people with disability: Report for the Disability Services Commissioner. Living with Disability Research Centre, La Trobe University. http://arrow.latrobe.edu.au:8080/vital/access/manager/Repository/latrobe:42524
• Barrier Free Living. (n.d.) Domestic violence & disabilities. Author. https://www.bflnyc.org/domestic-violence-and-disabilities/
• CCTASI at Northwestern University. (2017, April 20). Remembering trauma official film [Video]. YouTube. https://youtu.be/v13XamSYGBk
• Disability & Abuse Project (2013). Findings from the 2012 Survey on abuse of people with disabilities. Spectrum Institute. https://web.archive.org/web/20170313231046/http://disabilityandabuse.org/survey/findings.pdf
• Galindo, N. (2020). Addressing trauma in individuals with IDD. Relias. https://www.relias.com/blog/addressing-trauma-in-individuals-with-idd
• Keesler, J. M. (2014). A call for the integration of trauma‐informed care among intellectual and developmental disability organizations. Journal of Policy and Practice in Intellectual Disabilities, 11(1), 34-42. https://doi.org/10.1111/jppi.12071
• Keesler, J. M. (2018). Adverse childhood experiences among direct support professionals. Intellectual and Developmental Disabilities, 56(2), 119-132. https://doi.org/10.1352/1934-9556-56.2.119
• Mental Health Connection of Tarrant County. (n.d.) Recognize trauma: Change a child’s future. Author. http://recognizetrauma.org/
• Substance Abuse and Mental Health Services Administration. (SAMHSA; 2014). SAMHSA’s concept of trauma and guidance for a trauma-informed approach. Author. https://store.samhsa.gov/product/SAMHSA-s-Concept-of-Trauma-and-Guidance-for-a-Trauma-Informed-Approach/SMA14-4884
• Wigham, S., & Emerson, E. (2015). Trauma and life events in adults with intellectual disability. Current developmental disorders reports, 2(2), 93-99. https://doi.org/10.1007/s40474-015-0041-y