Trauma-Informed Care for Individuals with Intellectual and Developmental Disabilities: From Disparity to Policies for Effective Action

Abstract

People with intellectual disabilities (ID) are an often overlooked minority population. They experience significant health disparities and a high risk of exposure to traumatic events that can lead to stress-related disorders. Access to effective treatments for stress-related disorders is limited for people with ID due to a lack of appropriate assessments and common communication deficits. We discuss and analyze four factors that have led to these disparities: (1) historical segregation; (2) society’s response to identification of trauma in vulnerable populations; (3) lack of accessible assessments and treatments for stress disorders in people with ID; and (4) communication deficits common in people with ID. Based on this analysis, we suggest behavior analysts advocate for policy development that would (1) increase acknowledgement of trauma in people with ID and mandate sharing of information about trauma across providers; (2) require observable and measurable goals be included in the assessment and treatment of trauma-related behavior change; and (3) increase funding for services and research in this area.

Health disparities are significant differences in health between groups of people. They occur due to preventable causes, often related to historical or current discrimination based on membership in a specific group (Crook et al., 2020). For example, people with intellectual disabilities (ID) comprise .5–1.5% of the U.S. population (McKenzie et al., 2016). It is unfortunate that discrimination against people with ID has put them at a disadvantage, leading to significant health disparities (e.g., Krahn et al., 2015; Spassiani et al., 2019) that are frequently overlooked. Relative to people without ID, people with ID are less likely to access all forms of health care and are less likely to receive appropriate preventative care for their age and gender (Robinson et al., 2012). Additionally, people with ID are three to four times more likely than people without ID to experience adverse events such as abuse, neglect, and medical trauma (Brenner et al., 2018; Daveney et al., 2019; Haruvi-Lamdan et al., 2018). In recent years, the United States has become much more aware of the prevalence and impact of adverse events on mental and physical health. However, policies and initiatives designed to improve quality of life for people who have experienced adverse events often do not benefit people with ID because they are rarely tailored to address the specific, unique needs of this population (Mpofu et al., 2020).

People with ID face a greater risk than people without ID of experiencing adverse events and a greater risk of developing stress disorders subsequent to adverse events (Brenner et al., 2018; Daveney et al., 2019; Haruvi-Lamdan et al., 2018). This is influenced, in part, by deficits in adaptive living skills that make people with ID, relative to people without ID, reliant on others for protection and care for many more years, often their entire lives (Mpofu et al., 2020). An increased number of caregivers across their lifespan increases risk of exposure to abuse/neglect from caregivers. Some people with ID also engage in problem behavior (e.g., aggression, self-injury, property destruction) that can make caring for them stressful. Increased stress for caregivers has also been suggested as a cause of higher likelihood of abuse and neglect (Thornberry & Olsen, 2005). Additionally, communication difficulties increase the likelihood of experiencing abuse and neglect because people are unable to report on abuse/neglect in a timely manner, if at all (Kildahl et al., 2019). Finally, the risk of developing posttraumatic stress disorder (PTSD) has been linked to intelligence quotient (IQ); specifically, veterans with lower IQs were more likely to demonstrate PTSD symptoms following exposure to adverse events (Breslau et al., 2013; Brewin et al., 2000; Macklin et al., 1998).

Not all people who experience adverse events will go on to display significant problematic behavior changes associated with PTSD. However, experiencing an adverse event is a critical feature of experiencing trauma. A conceptual analysis of the difference between experiencing adverse events and experiencing trauma is important but beyond the scope of this article. In this article, we will use the term “adverse events” to describe events that are significantly aversive, including (but not limited to) those described on the Adverse Childhood Experiences scale (ACE; Felitti et al., 1998), such as abuse, neglect, and serious injury. We will use “trauma/traumatic” to describe experiences that have produced long-term, undesirable changes in behavior (e.g., posttraumatic stress disorder). Despite high risks of both exposure to adverse events and trauma, people with ID face a lower likelihood of finding accessible services to address stress-related disorders. Increased exposure to adverse events and low likelihood of access to appropriate services combine to result in very low chances of full recovery following traumatic experiences for people with ID (Mitchell & Clegg, 2005; Rowsell et al., 2013; Murphy et al., 2007). The lack of resources available to people with ID who experience traumatic events could be addressed by specific policy development.

In recent years, federal policy has been developed to improve access to health care, including health care specifically related to the effects of exposure to trauma across, multiple populations, including: (1) the general population (e.g., Family Violence Prevention and Services Improvement Act, 2021; Victims of Child Abuse Act Reauthorization 2018, 2019; Trauma-Informed Care for Children and Families Act of 2017; Mental Health Services for Students Act, 2020); (2) veterans (e.g., VA MISSION Act of 2018; Commander John Scott Hannon Veterans Mental Healthcare Improvement Act of 2019); (3) women (e.g., Violence against Women Reauthorization Act of 2013); and (4) indigenous people (e.g., Not Invisible Act of 2019). These policies are unlikely to improve care for people with ID due to historical segregation and lack of specific policy components tailored to the unique needs of people with ID (Mpofu et al., 2020). Some states have specified that there are specific “gaps” in service systems that need to be improved to provide adequate care for people with ID who have experienced trauma (e.g., Illinois Mental Health Strategic Plan, 2013; Vigna & Connor, 2020; Statewide Behavioral Health Coordinating Council, 2020). Additionally, some states have set goals that behavior services provided by state agencies become “trauma-informed,” “acknowledge the effects of trauma” and “support recovery” following trauma for people with ID (e.g., Statewide Behavioral Health Coordinating Council 2019a, p. 10, 2019b). These are goals that behavior analysts could be influential in fulfilling. Attainment of these goals would improve services not only for people with ID but all people with limited communication skills (including young children) and potentially all people regardless of communication skills. This article will have two foci. First, we will discuss and provide a behavior-analytic conceptualization of four factors that have contributed to health disparities of people with ID who have experienced adverse and traumatic events:

• historical segregation of people with ID;

• historical response of societies to identification of trauma exposure in vulnerable populations;

• communication deficits in people with ID;

• a lack of trauma-focused assessment and treatment tools that are appropriate for people with ID.

Second, after discussing each pair of factors, we suggest areas of policy development that could begin to improve care for people with ID who have been exposed to adverse events.

Historical Segregation and Response to Trauma in Vulnerable Populations

Factor 1: Historical Segregation

Historical segregation of people with ID has directly contributed to high rates of trauma in people with ID and has directly decreased the availability of community-based services that are accessible to people with ID. Decreased accessibility of services has been a direct result of segregation because when those services (e.g., “talk” therapies or group therapies) were developed, people with ID were not widely integrated into the general population of people seeking services (McCausland et al., 2016; Mpofu et al., 2020). That is, developing services to be accessible to people with ID was not a priority because there were not many people with ID in the community seeking those services.

The social concept of ID itself has its roots in discriminatory practices. For example, in the United States, the initial tests to diagnose ID were developed for the purpose of segregating people believed to be dangerous to society because of their “mental deficiencies” (Mpofu et al., 2020). During the eugenics movement, which broadly proposed to purge human genetics of these “mental deficiencies” to build a “pure” human race, many people in the United States with ID were moved to institutions where they were often sterilized and housed until death (Keith & Keith, 2013). In large part due to the health disparities perpetuated by segregation and social stigma, life expectancy for people with ID has historically been significantly lower than for people without ID (Patja et al., 2001). Despite increases in life expectancy over the past 50 years, the risk of low quality of life and a host of health disparities remain (Mpofu et al., 2020).

Beginning in the 1960s in the United States, as perceptions of people with disabilities slowly shifted, deinstitutionalization began. As the rights of many vulnerable groups (e.g., people of color, women, and veterans) came to the forefront of the political world, people with disabilities also benefited from this focus on human rights. In 1972, the courageous reporting of Geraldo Rivera exposed the horrific conditions in which many people with ID lived in state institutions (Rivera, 1972). In the United States, from 1977 to 2009 the number of people living in state institutions decreased from 154,600 persons to 32,900 (Larson et al., 2012) due to in part improvements in access to community services for people with ID.

Deinstitutionalization, however, did not immediately end discrimination towards people with ID or immediately improve their quality of life. For example, for people with more severe ID, physical movement into communities may have produced a worsening of their quality of life. In particular, for some in this smaller and more vulnerable group, deinstitutionalization and a shift towards community living negatively impacted their health. When funding was reduced or eliminated for institutional settings in an effort to encourage community integration, most communities were not fully prepared to assume appropriate care for people with ID and these individuals suffered loss of care and their adaptive skills declined (e.g. Crichton, 1998). Further, despite the hope that deinstitutionalization would improve social connectedness for people with ID, community living has often not improved social connectedness. Evidence of this is found in reports that people with severe to profound ID living in the community have an average of only two people who are not paid staff regularly visit them (Kilroy et al., 2015). Additionally, these visits have been found to rarely occur more than monthly (McCausland et al., 2016). In particular, McCausland et al. found that over 40% of individuals had not had contact with a nonpaid friend in over a year. These factors combine to increase risk of negative impacts of adverse events, because lack of social connectedness is correlated with the development of trauma responses following exposure to adverse events (Holt-Lunstad, 2017; Kintzle et al., 2018; McDermott et al., 2012). These negative impacts are further enhanced by the unpreparedness of many communities to care for people with ID because there are often limited services available to them in their communities (Mitchell & Clegg, 2005; Mpofu et al., 2020).

The fallout of the eugenics movement and the devaluing of people with ID has been long lasting and far reaching. Deinstitutionalization has not solved some of the most basic of problems that segregation caused—people with ID are still frequently socially isolated and not seen as valuable members of their communities. As policies and practices have evolved over the past 60 years to improve quality of life for people in other vulnerable groups, people with ID have frequently not benefited from these changes because they are not the population of interest and have not been fully integrated in communities. Unlike some other vulnerable populations, highly specialized services are often needed to provide adequate care for people with ID. Policies that are meant to decrease overt discrimination towards people with ID are not as effective in developing available resources for this population because the services available are often not accessible to people with ID. For example, discrimination based on gender that limits access for women could be reduced by mandating access to those services for women. For a person with ID, services available to people without ID (e.g., “talk” therapy or support groups) do not become accessible to a person with ID who cannot talk just because a policy states that providers may not discriminate against people with ID. Instead, these services will need to be significantly adapted to be made accessible to a person who cannot speak.

Factor 2: Historical Response to Trauma

The second barrier to addressing trauma for people with ID is not specific to people with ID but has been observed across several vulnerable groups of people. Understanding historical societal responses to posttraumatic behavior changes may improve our understanding of the barriers to addressing traumatic exposures in vulnerable populations.

Any population can only be described as “vulnerable” in comparison to another less “vulnerable” population. When health disparities exist, they often exist to the benefit of one group and the detriment of another group. There are factors that contribute to the perpetuation of current disparities, simply because maintenance of the status quo is beneficial to the group that is “less vulnerable.” Because of the motivation of more powerful people groups to maintain the status quo, vulnerable (less powerful) groups are often prohibited from being able to access the necessary resources to move away from environments with high risks of exposure to adverse events or to access treatment for trauma responses (Herman, 1992; Wilson, 1994). The lack of resources for people with ID now is similar to the historical lack of resources faced by other marginalized groups exposed to high frequency of adverse and traumatic events.

Several examples of how these disparities have affected other groups may improve our understanding of some of the factors that make it difficult for people with ID to access appropriate care. In her book, Trauma and Recovery, Herman (1992) described the historical evolution of our current understanding of PTSD. Throughout her account, the societal resistance to the identification of trauma in vulnerable populations is a common theme. Starting in the 1890s, Freud was one of the first people to extensively document similarities in behavior patterns across people following abuse. Many of his early descriptions are similar to our current definition of PTSD. Freud’s early descriptions of these behavior patterns, and his suggestion that the “neurotic” behaviors he was studying were the result of abuse, implicated many people who were either more powerful as abusers or had not intervened to stop abuse. Because of these implications, his original theories were not well-received. In the face of this pressure, he eventually proposed theories that placed the blame for these “hysterical” behaviors on women’s childhood oversexuality rather than their environments (e.g., Wilson, 1994).

In the early 1900s, men who had fought in the world wars demonstrated behavior patterns similar to the behavior patterns of the women described by Freud as “hysterical.” These men, like the women Freud had described, faced resistance when suggesting the environment as the cause of these behavior patterns. These men were frequently described as cowards and were often treated with highly aversive procedures. The behavior patterns these men displayed, originally called “shell shock,” were suspected to be caused by brain damage from exposure to repeated explosions (i.e., as the name implies). These initial understandings allowed society at large to continue blaming the individual for their seemingly “abnormal” or maladaptive behavior rather than looking to the environment for causes and variables that maintained these behavior patterns (e.g., Herman, 1992; Loughran, 2012; Wilson, 1994).

Following the Vietnam War, in the 1970s, the first large-scale investigation of the effects of combat on behavior was conducted and led to the description of PTSD. Even once PTSD was added to the Diagnostic and Statistical Manual (DSM), society began to take PTSD more seriously only after large groups of people were able to connect with each other via growing access to media and increases in “support” groups (i.e., groups comprised of people who experienced similar traumas, such as war and large-scale sexual abuse). It has not been until much more recently that the effects of PTSD in populations other than veterans of war, such as women, children, and people with ID who have experienced sexual or physical abuse, were more widely recognized. Unfortunately, although the effects of trauma have become more widely recognized for women and children, there is still little acknowledgement of the effects of traumatic events for people with ID (Kildahl et al., 2020). The same variables that encouraged Freud to find another explanation for women’s “hysterical” behavior may explain, at least in part, the continued minimization of the effects of trauma on people with ID. For example, when “trauma” is identified, particularly in vulnerable groups, that also means a responsible party or context is identified, and because the responsible party or context tends to be in a position of greater power than the person who has been victimized, it can be exceptionally difficult to assess and treat behavior related to abuse and neglect on both an individual and a systemic level (Herman, 1992). Locating the “cause” of problem behavior inside a person rather than in the environment provides an easy way to dismiss the need for change at a substantial cost to those who need help.

Policy Recommendation 1: Advocate for Policies that Require Acknowledgement of Trauma and Sharing of Information

Advocating for policies that require specific acknowledgement of trauma and sharing of information could begin to decrease disparities that have been perpetuated for people with ID due to segregation and historical responses to trauma exposure. Acknowledging the effects of trauma means recognizing two interconnected issues: (1) maladaptive behavior changes often occur for people who have experienced traumatic events and (2) previously neutral stimuli that have been paired with the traumatic events may come to exert control over adaptive and maladaptive behavior in problematic ways. Overt recognition and acknowledgement of specific events as traumatic is important for two reasons. First, it is important to explicitly describe traumatic situations so that everything possible can be done to ensure that these events are not repeated (particularly in cases of abuse or neglect). Second, because people with ID often cannot communicate about past events to their caregivers, access to information about past traumatic events is critical for all caregivers and service providers to assist them in avoiding unnecessary (and potentially distressing) exposure to similar situations.

Recognition of the effects of traumatic events is important for ensuring that protections are put in place to prevent exposure to similar incidents (in cases of abuse and neglect) and to avoid retraumatization. A commitment to realism, a core tenet of behavior analysis (Skinner, 1953), should drive behavior analysts to recognize that traumatic events exist in reality, regardless of a person’s perception, and therefore influence behavior patterns regardless of their recognition. This means that obtaining information about past traumatic events, when it is possible, is important. Policies that require information about relevant traumatic and adverse incidents be shared with future service providers are important to ensure appropriate care. Mandates ensuring that relevant information is disclosed could also be helpful in the development of assessments and treatments for people with ID who may not be able to self-report history or current stimuli that may have been associated with past traumatic events. Finally, policies that promote easy access to past records, such as electronic medical and behavioral records, will be necessary to ensure this information is communicated to service providers across the individual’s lifespan.

Specific policies that could facilitate trauma prevention and ameliorate the effects of adverse experiences for people with ID could include the following:

1. Until tools specific for people with ID are available, professionals should use tools such as the Adverse Childhood Experience Scale (ACES; Felitti et al., 1998) to determine important events that should be documented in a person’s medical record and made available to all medical and behavioral health providers. The descriptions provided by Felitti et al. on the ACES questionnaire could be expanded to include “caregiver” as a replacement for “parent” and consideration of events that have likely been witnessed between caregivers and peers should also be included. For example, in the category “Mother treated violently,” the questions should be expanded from “Was your mother ever repeatedly hit over at least a few minutes?” to “Was a caregiver or housemate ever repeatedly hit over at least a few minutes?” This would require environmental events that are not directly related to the individual (e.g., documented abuse from a staff to a peer) but may directly impact the individual’s risk of directly experiencing trauma (perhaps undocumented abuse from the same caregiver towards that individual or witnessing of abuse from the staff to the peer) be included in medical records.

2. Certification boards, such as the BACB, could require a minimum number of continuing education credits in understanding the relationship between traumatic experience and behavior. For example, there could be instruction on behavior changes that are likely to be observed for people who have experienced trauma and courses on best practices for improving safety skills (i.e., which could serve as preventative or protective factors for certain forms of adverse events).

Communication Deficits and Lack of Assessment Tools

Factor 3: Communication Deficits

A third factor contributing to the health disparities of people with ID who have experienced traumatic events are the communication deficits that often result from ID. Communication deficits for people with ID present three primary issues with respect to traumatic events: (1) increased risk of traumatic experience; (2) limitations in reporting experience; and (3) difficulty accessing effective services (e.g., Daveney et al., 2019; Haruvi-Lamdan et al., 2018). First, communication impairments and problem behaviors can make it stressful to care for people with ID (Ng & Rhodes, 2018), which increases the number of caregivers across the lifespan, a factor correlated with an increased risk of abuse and neglect. Second, communication difficulties make it difficult or impossible for people with ID to report if and when adverse events have occurred, which makes it more likely that they will remain in dangerous situations for longer periods of time. Finally, communication deficits can result in limited understanding of and inclusion in planning for their futures. These issues put people with ID at a greater risk of trauma responses to developmentally “typical” life changes, such as body changes related to puberty or changes in residences (Martorell et al., 2009).

Unlike other minority groups that have overcome the failure of society to recognize the effects of trauma by banding together to advocate for change (e.g., the civil rights movement, veteran studies of trauma, the #MeToo movement), many people with ID are unlikely to ever be able to advocate for large scale change in the same way. The communication deficits prevalent for people with ID often make it difficult for them to express even their most basic needs, which makes it highly unlikely that advocacy for appropriate recognition of the effects of trauma will come from within this population. Due to the communication deficits common among people with ID, it is less likely that this group will ever be able to orchestrate support groups or lobbying groups to advocate for large-scale policy changes that require acknowledgement and increased support following traumatic events. Rather, policy changes will likely need to be advocated for by individuals with ID and by parents, caregivers, siblings, and professionals.

Factor 4: Lack of Appropriate Assessment Tools

The previous three barriers all contribute to the fourth barrier: limited access to appropriate health care for people with ID who have experienced trauma. Current tools to assess and treat maladaptive behavior changes that occur for people with ID following traumatic events are extremely limited. For example, assessments of mental health disorders rely primarily on caregiver report or verbal self-report, and many people with ID are unable to self-report symptoms (e.g., Fletcher et al., 2007; Mevissen et al., 2020; Kildahl et al., 2019; Soylu et al., 2013). Available tools (e.g., the Anxiety Disorders Interview Schedule-IV) that have been validated with children and people with autism spectrum disorders have frequently excluded people with ID as participants (or only included people with mild ID; e.g., Kerns et al., 2017) in studies demonstrating their reliability and validity (e.g., Silverman et al., 2001; Ung et al., 2014).

Assessment of stress disorders for people with ID is further complicated by “diagnostic over-shadowing,” in which diagnosis is difficult because symptoms of one disorder (e.g., PTSD) can be inaccurately attributed to another disorder (e.g., ID, mood disorders). This presents a unique issue in the assessment of PTSD in people with ID (Kildahl et al., 2020). Specifically, “diagnostic overshadowing” often results in people with ID who have experienced trauma being misdiagnosed with psychotic disorders or bipolar disorder (e.g., Rojahn et al., 2004; Bakken et al., 2014; Fletcher et al., 2007). Due to the reliance on self-report to assess PTSD, there are few evidence-based assessment tools for people with moderate to severe ID (e.g., Mevissen & De Jongh, 2010; Mevissen et al., 2020; Kildahl et al., 2019; Soylu et al., 2013; Mevissen et al., 2014).

To date, there are only a few studies that have attempted to use trauma treatments that are empirically supported for the general population with individuals with ID. For example, several adaptations of effective treatments have been demonstrated in case studies of people with mild to moderate ID (e.g., Fernando & Mendlicot, 2009; Mevissen et al., 2011a; Mevissen et al., 2011b). However, qualitative studies report that despite caregivers’ attempts to find effective treatment, symptoms of stress-related disorders persisted for people with ID for 3–20 years after exposure to traumatic events. Additionally, many caregivers reported great difficulties in even finding clinicians who would attempt treatment for people with moderate to severe ID (e.g., Mitchell & Clegg, 2005; Rowsell et al., 2013; Murphy et al., 2007).

Policy Recommendation 2: Advocate for Policies that Require Individualized Assessments and Adapted Services for People with ID Following Traumatic Events across the Lifespan

Insurance mandates for coverage of behavior-analytic services and the Individuals with Disabilities Education Act (IDEA) have greatly increased access to behavior services for children with developmental disabilities, including ID (e.g., Mpofu et al., 2020). As people with ID age, however, these services are often not covered by insurance or educational agencies. These services are critical in maintaining safety and promoting recovery following exposure to traumatic events. Advocating for policies that require funding, individualized assessments, and adapted services to aid in recovery following exposure to traumatic events could begin to reduce disparities that arise from communication deficits prevalent in people with ID. Due to the lack of currently available assessment tools and treatments to address maladaptive behavior changes following exposure to traumatic events, policies requiring individualized assessment and treatment planning for people with ID who have experienced trauma may begin to reduce disparities. Policies requiring schools to provide functional behavior assessments and behavior intervention plans substantially increased access to appropriate education and behavior improvements for children with ID. Similar policies for children and adults who have ID and have been exposed to traumatic events are needed.

Assessments that are already widely used in behavior analysis could be expanded to address changes in behavior following exposure to traumatic events. For example, behavior analysts have a long history of development of assessment tools to identify effective treatments for people with ID and other people with nontypical communication methods. The development of assessments and tools to identify current preferences and histories of reinforcement for people without typical communication skills allows for behavior analysts to act as a type of interpreter for this population, increasing access to appropriate diagnosis and treatment. In populations with ID, symptoms of stress-related disorders can include aggression, irritability, self-injury, noncompliance, social isolation, and sleeping problems (e.g., Kildahl et al., 2019; Mevissen & De Jongh, 2010; Mevissen et al., 2020; Rojahn et al., 2004; Soylu et al., 2013). When people with ID engage in these types of problem behavior, they are often referred to behavior analysts for functional assessments and treatment, whether or not these behaviors occurred or worsened after exposure to a traumatic event (Pyles et al., 1997). Policies that advocate for regular (e.g., yearly) functional behavior assessments conducted by behavior analysts may provide the best available option for people with ID who have experienced traumatic events to access care to improve undesirable behavior changes.

Appropriately conducted functional behavior assessments, and the intervention plans developed from them, should increase consistency and safety and empower people with ID to make meaningful choices. These are all values advocated for by the trauma-informed care (TIC) framework. Further, behavior analysts, particularly those working with people with ID, should be aware of risk factors for people with ID and be sensitive to the need to evaluate client’s behavior to determine if neglectful or abusive reinforcement or punishment histories appear to have shaped the client’s current behavior. These factors may be best assessed using our most powerful assessment tool—functional analysis (FA; e.g., Beavers et al., 2013; Iwata et al., 1982/1994; Kurtz et al., 2011). The development of FA demonstrated that most problem behavior develops and persists due to the changes they produce in the person’s environment. Interestingly, FA demonstrated the ability of people with ID to emit behavior in highly functional ways, that is, to influence their environment. This assessment method demonstrated that the behaviors of people with ID function in relationship to the environment adaptively in the same lawful ways that the behaviors of people without ID function. Rather than taking a primarily “deficit” based perspective in the assessment and treatment of problem behavior, the FA approach focuses on identifying the ways that people are emitting behaviors (even those that are dangerous and considered a “problem” to those around them) to successfully navigate their environments and access the things they want and need. Although it is clearly problematic for someone to engage in dangerous behaviors such as hitting themselves, hitting others, or damaging property, these behaviors are often not described as “problematic” by the person engaging in them, rather they are described as “problem behaviors” by others in the environment (e.g., caregivers). Despite the injury and pain they may be causing, most of these behaviors persist because they are adaptive in the sense that they are functioning for the individual to access to something that they need or remove something they don’t want or need.

FAs should be sensitive enough to detect changes in behavior that occur following exposure to traumatic events. In the learned helplessness (LH) literature, Eexposure to traumatic events has been shown to result in measurable behavior changes across many different species (e.g., Maier & Seligman, 2016). LH has been used extensively in the development of pharmaceutical treatments for PTSD (e.g., Hammack et al., 2012). These types of measurable behavior changes could also be used to inform behavioral treatments for people with ID. The literature on LH in nonhumans has shown dramatic changes in behavior that can occur in any direction (increase/decrease in frequency or intensity) and shows that these changes are frequently controlled by the presence or absence of stimuli that were present at the time of the exposure to trauma. Therefore, if a behavior analyst is treating a person with ID who has significant changes in behavior (function, frequency, or intensity) and a history of an adverse event prior to these changes, the behaviors and stimuli that could have been associated with the traumatic event should be evaluated carefully. For example, if a person with ID is exposed to an adverse event and in the following months behavior changes include increases in sleep difficulties and increases in self-injury, changes in the frequency and potentially the function of self-injury should be assessed, as these changes may indicate that this event has produced trauma responses. Prior to exposure to the traumatic experience, self-injury may have functioned to gain access to tangible items. If the traumatic event included injuries sustained while the person was alone, after the traumatic event (particularly when stimuli that are associated with the past trauma are present), self-injury may become maintained by attention. Alternatively, self-injury may become multiply controlled or the tangible function may cease, as a decreased interest in previously preferred stimuli is frequently reported for people with ID following exposure to traumatic events (e.g., Kildahl et al., 2019). Accurate identification of functions of behavior and potential identification of trauma-related stimuli would likely be critical to the development of effective treatments for people with ID.

The behavior disorders we are frequently called upon to treat in people with ID occur, are maintained, and are treatable by behavior analysts because they are a function of environmental variables that are amenable to manipulation by clinicians. Despite the common characterization of trauma, described by Rajaraman et al. (2021) as an “internal response to an aversive external event” (p. 42), the reasons that people in the typically developing population seek treatment for trauma symptoms are indeed primarily external behaviors (e.g., Van der Kolk, 2015). Additionally, the treatments available to people in the typically developing population are seen as successful when they improve external behaviors (e.g., improved sleep, fewer instances of aggressive outbursts, increased engagement in social interactions, increased engagement with preferred stimuli). In general, these observable behaviors are what drive people to access treatment and there are effective treatments to bring about these preferable behavior changes. However, the available effective treatments Eye Movement Desensitization and Reprocessing (EMDR) and trauma-focused cognitive behavior therapy (TF-CBT) use verbal report to assess effects of trauma and effectiveness of treatment. Recent advances in the use of animal models of PTSD have suggested that these treatments may be effective not due to the putative “reprocessing” aspects of the treatment but rather due to the experiential and more behavioral aspects of these treatments. Maier and Seligman (2016) noted that the focus of early psychotherapy research was having the person describe and talk about the historical event that occurred prior to the development of their stress-disorder symptoms. However, therapies that focus on repeated exposures to thinking about the event alternated with relaxation responses or “future” focused talk therapies that include making plans for how to respond to physiological anxiety responses have been more effective. These therapies are more congruent with studies with nonhuman animals that have experienced exposure to inescapable aversive stimuli and demonstrate improved functioning after experience with escape training (Maier & Seligman, 2016).

As providers of behavioral health services, behavior analysts are called to do more than provide TIC by promoting healthy environments. We are called to evaluate the effects of environmental variables on behavior and adjust those variables to promote the best possible outcomes for each individual we serve. Policy mandates designed to decrease overtly discriminatory practices and increased overall availability of services are unlikely to improve access to health services for people with ID. For this group, different specialized services are needed to decrease disparities. Improvements in education for people with ID occurred following policy development in IDEA, which required schools to provide appropriate education for all students and individualized education plans for students in special education. Similar improvement for people with ID who experience trauma will also likely involve large-scale policies requiring individualized healthcare assessment and treatment planning.

Specific policies that could facilitate trauma prevention and ameliorate the effects of adverse experiences for people with ID could include the following:

1. The Behavior Analyst Certification Board (BACB) Ethics Code for Behavior Analysts, Compliance Code Section 2.0, in particular 2.12 and 2.13, and government regulations specify that behavior analysts must complete functional assessments prior to implementing behavior-change interventions. Likewise, similar requirements could include requiring behavior analysts to complete trauma-focused assessments for people with high risk of trauma exposure. This could include conducting established informant-based assessments, such as the ACES questionnaire. This could also include regular data collection on behavior that is likely to change following exposure to adverse events in at-risk populations, such as data on sleep, data on engagement in preferred activities, data on participation in social interactions, and data on the function of problem behavior.

2. Governmental regulations, such as the Autism Supplement in the state of Texas (TAC 89.1055(e)), require schools to consider specific areas of support that are likely to improve access to appropriate education for children with autism. A similar regulation that could be adopted could require federally and state-funded intermediate care facilities for people with ID to consider environmental supports that may improve care for individuals who experience adverse events, trauma, or both. This could include:

   1. Guidance on safety skills that should be taught in publicly funded institutions and requirements that empirically validated methods of teaching those skills are used (e.g. behavioral skills training; Miltenberger et al., 2005)
   2. Modifications that could be made to the physical environment that could improve adaptive functioning for an individual based on what is known about their trauma history.
   3. Staffing assignments and personnel characteristics of staff that can be adjusted to improve adaptive functioning for an individual based on what is known about their trauma history.
   4. Schedule adjustments that should be made to improve adaptive functioning based on what is known about their trauma history.
   5. Procedures/teaching techniques that should be used or avoided to improve adaptive functioning based on what is known about their trauma history.
   6. Providing training to staff or peers that would improve adaptive functioning based on what is known about their trauma history.
   7. Determining if there are new requests that should be taught to allow this person more control over their environment that could be beneficial based on what is known about their trauma history.
   8. Identifying areas where greater variety in choices can be provided on a regular basis to improve adaptive functioning based on what is known about their trauma history (e.g., Can this person be given a choice each day to select which staff assist him/her with showers?).
   9. Identifying specific safety skills that need to be taught, evaluated, and reinforced on a regular basis to improve adaptive functioning based on what is known about their trauma history.
   10. For all the support considerations listed above, ensuring that to the greatest extent possible, supports and assessment tools are based on peer-reviewed procedures and ensuring that data collection strategies are clearly defined to evaluate the success of these supports as much as possible using direct measures of the individual’s behavior.

Policy Recommendation 3: Advocate for Policies to Increase Funding for Research on Assessment and Treatment of Stress Disorders for People with ID

Policies that increase funding for research on the assessment and treatment of stress-disorders for people with ID are needed to reduce disparities that have arisen from (1) communication differences for people with ID and (2) the limited availability of assessment tools and treatments for people with nontypical communication repertoires. Research agendas for the National Institute of Health are developed by Congress. Over the past several years, research on improving care and education for children with ID have often been prioritized through the National Child and Human Development Institute (https://www.nichd.nih.gov/grants-contracts/SBIR_STTR/priorities). However, there is limited funding for research involving the development of assessments and treatments for adults with ID and even less funding for research on developing assessments and treatments for adolescents and adults with ID who have experienced trauma. A search of projects currently funded through NICHD does not identify any studies evaluating the assessment or treatment of trauma-related behavior changes for people with ID (https://reporter.nih.gov/search/6Fnoz-ET1k2hnxK6takqFQ/projects). Likewise, research on the impact of stress and traumatic events is an area of priority for the National Institute of Mental Health (NIMH); however, most funded projects would not be accessible to participants with moderate to severe ID. As of October 31, 2021, of 16 studies related to PTSD actively recruiting participants, only 1 study would possibly be able to include participants with moderate to severe ID, because most of these studies required verbal report (https://www.nimh.nih.gov/health/trials/posttraumatic-stress-disorder-ptsd). A search of NIMH-funded projects involving individuals with PTSD resulted in 365 projects (https://reporter.nih.gov/search/25dztc-ce0atSXWWy1mDMg/projects); however, the addition of “intellectual disability” in the search resulted in only 1 NIMH-funded study (https://reporter.nih.gov/search/OYJonmU_SE-WuRcCVz9dew/projects). Because people with ID are unlikely to be able to advocate for increased funding for research in these areas, parents, siblings, caregivers, and professionals will need to more frequently—and loudly—advocate for increased funding and interest in conducting this research.

Behavior analysts can begin to prioritize conducting research to inform policymakers on effective assessment and treatment strategies for people with ID. Due to the variety of repertoires of people with ID, it is likely that within-subject methods, with which behavior analysts excel, would be best suited to the development of assessment and treatment strategies for people with ID who have experienced trauma. Behavior analysts can also advocate for the description of operationally defined goals for trauma treatments that are provided to people with ID, to ensure that the efficacy of these treatments is evaluated on an individual basis. Similar to policy developments that have required specification of individualized goals for students in special education, behavior analysts can advocate for policies that require observable and measurable goals set forth by treatment providers who seek to address undesirable behavior changes after traumatic events (e.g., decreases in adaptive skills, increases in problem behavior). Additionally, as we develop assessments and treatments to address the effects of exposure to traumatic events, we must continue to advocate for policies that recognize the behavior of people with ID who have experienced traumatic events is lawful and determined. There is a long history of superstition and locating of “damage” following exposure to traumatic events “inside” of the individual who has experienced trauma (e.g., Freud’s theories, the shell-shock account). Our effectiveness at improving quality of life for people with nontypical communication strategies has been due to our commitment to empiricism. Empiricism, that is, the commitment to objective, scientific analysis as our basis for understanding behavior, has allowed us to make progress in developing adaptive skills, reducing dangerous behaviors, and most important, improving communication and choice opportunities for people with ID. By using our analysis of the functions of behavior with people with nontypical communication repertoires, we can advance their wishes and empower them to make meaningful choices. However, if the assumption at the policy and system level is that, following exposure to traumatic events, the “core identity” of the people we work with has changed in such a way that their behavior may not be controlled by the immediate environment, as the TIC framework suggests (e.g., Rajaraman et al., 2021), we could limit or preclude effective treatment to people with traumatic histories, which further perpetuates the disparities that exist. For example, Rajaraman et al. suggested that for people who have experienced traumatic events, immediate environmental variables may not be functionally related to current behavior in the same ways as they are for people who do not have trauma histories. It is possible this is true, but this is an empirical question that remains to be answered. Behavior analysts’ history with highly effective assessment and treatment methods with people with ID suggests we are well poised to answer this question. Further, our current literature suggests that careful analysis of environmental variables reveals functional relationships that are highly useful in the development of effective treatments. To appropriately care for those who have experienced trauma, we will need to identify ways to directly evaluate the effects of environmental variables on behavior changes following exposure to traumatic events. To do this, we will need policies that explicitly recognize the unique effects of trauma on individuals with ID and provide resources and funding for identifying, developing, evaluating, and disseminating effective assessments and treatments for individuals with ID who have experienced traumatic events.

1. Professional organizations could develop position statements, special interest groups, and model policies (e.g., APBA Model Behavior Analyst Licensure Act) to advocate for establishing and expanding funding at the state and federal level for the provision of trauma-focused research and clinical intervention development with people with ID. Greater awareness by behavior-analytic professionals of mental-health disorders in people with ID, and the substantially limited access to resources, is needed to provide pressure at the federal level to promote the development of funding mechanisms through the National Institute of Mental Health (NIMH). Many of the funding sources available through NIMH are focused on providing funds to psychologists and researchers conducting group-design research with populations that specifically exclude people with ID. Given this, it is critical that behavior analysts and their professional organizations increase awareness with NIMH and other funding agencies that behavior analysts, not psychologists, are often the primary behavior-health professionals providing services to people with ID. Therefore, increased funding is needed for within-subject, intervention-driven research conducted by behavior analysts working with individuals with ID who experience adverse events and trauma. The Values to Action website (https://www.valuestoaction.org/healthcare-guide) and Wagenaar and Burris’s Public Health Law Research: Theory and Methods (2013) are two tools that can provide more specific guidance for behavior analysts on practical steps to effectively advocate for policy change.

Specific policies that could facilitate increased funding for research on assessment and treatment of stress-disorders for people with ID could include the following:

1. Advocate for mandates that insurance cover applied behavior analysis services for people with ID of all ages who have had skill regressions or increases in problem behavior following exposure to adverse events.

2. Until such time as more behavior analysts have expertise in trauma-focused treatments, advocate for policies that would provide funding for and encourage behavior analysts providing treatment for people with ID following trauma to consult regularly with experts in evidence-based trauma-focused treatments for people in the general population

Conclusion

Many state and private agencies have set goals that behavioral health services for ID populations become “trauma-informed.” Recent publications have suggested ways that behavior analysts can align our services with the philosophies of the TIC framework (See Rajaraman et al., 2021). However, the TIC framework is not designed to treat behavior changes that occur following exposure to traumatic events (e.g., Keesler, 2014). The TIC framework assumes that given the pervasiveness of exposure adverse events in a given population, some (possibly all) human service organizations should interact with each individual (staff and client) with recognition that past traumas have likely influenced a person’s core identity. Further, this trauma affected the person to the point that their core identity has changed to that, first and foremost, of a person who experienced trauma, which substantially alters their interaction with their environment. The values put forth by the TIC philosophy are excellent values for any organization and focus on promoting a culture where safety, trustworthiness, choice, collaboration, and empowerment are emphasized. These are important values, but they do not, and are not designed to, directly combat the effects of traumatic events on behavior. Policy development is needed to: (1) ensure concrete acknowledgement of the effects of traumatic events on an individual basis; (2) develop individualized assessments and treatments for behavior changes that occur after exposure to traumatic events; and (3) make funding available for research to improve assessment and treatment of behavior changes following traumatic events for people with ID. To facilitate these policy developments, behavior analysts could decrease the current health disparities by conducting research to develop assessments and treatments to address behavior changes following exposure to traumatic events tailored to individuals with ID.

As a type of “interpreter” in our analysis of the behavior of people with ID, we are offered the opportunity to participate in reducing health disparities for people with ID and promote the dignity of human lives that have been historically undervalued. Through measurement and analysis of verbal and nonverbal behavior, we can assist people who are not able to communicate verbally or advocate for themselves using socially common behaviors to effectively influence their environment. Our measurement gives voice to those who are otherwise often voiceless.

Behavior analysts are uniquely positioned to facilitate the continued destruction of movements (e.g. eugenics) that have contributed to the vast disparities in healthcare provisions for people with ID. Opportunities for people with ID to be fully integrated into communities in which they are valued and cared for will require access to effective interventions to improve functioning after exposure to trauma. The development of these interventions will likely depend on the extent to which empiricism and determinism continue to be held as primary values of behavior analysts. Exposure to traumatic events does not fundamentally change an individual in such a way that their behavior is no longer lawful. To suggest otherwise is discriminatory and disrespectful to victims of traumatic events. Both desirable and undesirable behavior change is developed and continues due to the individual’s physiology, environment, and culture, regardless of the intent of the people in those environments. Although scientists and human-service providers have developed methods to assess and treat undesirable changes, many of these advances do not reach individuals with ID. A variety of policies, including those discussed above, will be needed to ensure this historically marginalized community has access to effective, trauma-informed and trauma-focused assessment and treatment. It is incumbent on all of us, for the health and wellness of our communities, to prioritize and support the rights of all people to safety, health, well-being, meaningful choices, and effective treatment.

Declarations

The authors have no competing interests to declare that are relevant to the content of this article.