: Developmental Disabilities and Mental Illness Margaret Charlton, Ph.D. Brian Tallant, M.S. Intercept Center, Aurora Mental Health Center, Aurora, Colorado Presented at the All Network Meeting December 11 13, 2003
Abstract Clients with developmental disabilities are particularly susceptible to a variety of traumatic events. However, few efforts have been made to develop specific trauma treatments to address their needs. We will review the literature regarding the incidence of trauma and trauma sequelae for clients who have developmental disabilities. We will then examine how modifications can be made to trauma treatment strategies developed for other non-disabled populations, in order to make the treatment more effective and accessible for clients with developmental disabilities. 2
Trauma Treatment With Clients Who Have Dual Diagnoses: Developmental Disabilities and Mental Illness People with developmental disabilities represent a relatively large portion of the population. The Federal Administration on Developmental Disabilities estimates that the national prevalence rate for developmental disabilities in the United States is 1.8%. The United States Census Bureau s 2001 population estimate is 285 million people, which would lead to an estimate of over 5 million people living in the United States who have developmental disabilities. A number of statistics are available regarding the incidence of trauma in people with developmental disabilities. However, reports consistently indicate that the available statistics are likely to under report the prevalence of trauma for this population. There are a number of reasons why this under reporting may be occurring, including difficulty in communicating that abuse has occurred, lack of ability to make a report, and problems with the justice system accepting the credibility of people with developmental disabilities attempting to report. James, in a 1988 study, found that while one in five cases of sexual abuse or assault are reported for the non-disabled population, only one of 30 cases are reported for people with developmental disabilities. In Goldson s 2002 statistics, he found that children with disabilities were between 1.2 and 2 times as likely to suffer from maltreatment as children without disabilities. Sobsey (1996) reports that individuals with disabilities are over four times as likely to be victims of crime when compared with the non-disabled population. In general, the literature shows that the incidence of maltreatment for children with disabilities is 1.5 to 10 times higher than the incidence for children without disabilities (Baladerian, 1991; Sobsey & Doe 1991; Sobsey & Vamhagen, 1989; Sullivan & Knutson, 2000; Westat, 1991). In addition, far more people with developmental disabilities receive care in institutional settings and the incidence of sexual abuse in such settings is four times higher than in the community (Blatt & Brown, 1986). People with developmental disabilities have a number of special characteristics, which may result in their being more likely to experience traumatic events. They are likely to be: trained to be 3
compliant to authority figures; dependent on caregivers for longer periods of time, for more types of assistance, and on a larger number of caretakers; less able to meet parental expectations; and isolated from resources to whom abuse reports could be made. They may also experience impairment in their ability to communicate or have impaired mobility so it is harder to get to a location to make a report. The developmental disability may result in the person experiencing cognitive and processing delays that make it difficult for the individual to understand what is happening in an abusive situation. People with developmental disabilities may also be more credulous and less prone to critical thinking than people without such disabilities, which may result in it being easier for the perpetrators of abuse to manipulate them. These problems are compounded by the fact that people with developmental disabilities are often not provided with general sex education, so they may not recognize what is happening to them in a sexually abusive situation. As well as being more prone to experience maltreatment, people with developmental disabilities are also more likely to experience negative mental health sequelae from the traumatic event, such as posttraumatic stress disorder. Even without exposure to trauma, people with developmental disabilities experience a predisposition toward emotional problems due to impaired resiliency (Burrows & Kochurka, 1995). They are less likely to have the protective factors that would lessen the effects of sexual abuse or other types of maltreatment (Mansell, et al., 1998). The more limited a person s resources are, the more difficult it is to cope with normal life stressors, let alone the increased stress associated with abuse or trauma. Vasterling, et al. (2001) found that in Vietnam veterans, a higher IQ appeared to act as a buffer to help prevent the veterans from developing posttraumatic stress disorder. Finally, people with developmental disabilities are less likely than others in the general population to receive appropriate treatment when they do experience a traumatic incident. This difference is in part due to a long-standing believe that people with developmental disabilities cannot benefit from traditional verbally oriented therapies (Mansell et al., 1998). In addition, there is a serious lack of trained professionals who are comfortable in working with people who have 4
developmental disabilities in order to help them process traumatic incidents. For this reason, the authors are working to present more training in this area. Method There are many specific methods for treating different types of trauma, including trauma related to natural disasters, accidents, invasive medical procedures, physical, emotional, or sexual abuse. Addressing all of these different types of specific protocols would be beyond the scope of the present paper. However, most of the protocols follow a similar methodology in which the client is helped to move through a series of phases. In most of these treatments the initial phase involves acknowledgment. That is, treatment begins with the survivor of the trauma, their family and other close people in their support network acknowledging and understanding the seriousness of the event that has taken place. Treatment then moves into a second phase, which focuses on establishing safety and building a sense of competency. The person who has experienced the trauma must feel that the environment is safe and that she/he is able to control emotions with regard to what was experienced. During the third phase, the trauma is processed to develop a thorough understanding of exactly what happened, how it affected the person, what aspects were worst at the time, and what aspects have been most problematic following event. Finally, the fourth phase involves transition beyond the trauma back to normal life. Our work has involved looking at these phases and developing ways of modifying the phases to meet the needs of people with developmental disabilities. In order to do this, it is important to understand some of the special characteristics of this population, as well as to understand normal trauma response. A normal response to trauma generally follows a pattern. It is important that these normal responses not be attributed to the person s developmental disability or other pre-existing mental illness. During the event, people typically experience a feeling of loss of control. It is very common to respond to the feeling of loss of control with dissociation. After the event, common symptoms include intrusion of material from the event, numbing; emotional constriction; intense efforts to control 5
experiences that might elicited emotions associated with the trauma; dissociative splitting off of aspects of the experience; hypervigilance, with an enhanced startle response and disruption in sleep pattern; shattered sense of safety; and disruption of self-identity. All of these normal responses to trauma represent a change from the developmentally disabled person s typical level of functioning and none of them are in any way due to the developmental disability. Results: Suggested Modifications to Phase Treatment To begin, there are some basic modifications that the therapist should keep in mind when working with a client who has developmental disabilities (Avrin, Charlton, & Tallant, 2002; Charlton, 2002; Mansell & Sobsey, 2001; Bűtz, Bowling, & Blitz, 2000). The therapist should slow down his or her speech and concentrate on using language that will be comprehensible to the client being served. It is helpful to use visuals whenever possible to reinforce verbal messages, which can include drawing pictures or writing down suggestions for change in brief outline form. Information should be presented one item at a time and the therapist should ask for feedback after each item to ensure clear comprehension. The therapist should be specific in making suggestions for change and should take the time to practice different ways of handling the type of tough situations the client is likely to encounter. The therapy session should be formatted so that key information is repeated. The focus of therapy should be on building coping skills and a feeling of competence. It is important for the therapist to be aware of any biases she/he may hold about working with this population. The therapist needs to be aware that people with developmental disabilities are as capable of making change as anyone who engages in psychotherapy, although the changes will occur more slowly. Phase One: Acknowledgment Be aware that the client with developmental disabilities may need special help in coming to a complete understanding regarding the traumatic event. Because of compromised language and cognitive processing skills, the therapist may need to spend extra time helping to explain the true nature of the event. Be sure to assess for misunderstandings that may contribute to increased 6
stress, such as feeling that because a tornado occurred when the clouds were dark, another tornado is likely whenever the clouds look dark. The therapist should help all of the people involved in the client s support system to understand that the trauma experience was real and threatening and that the client s response to that trauma is normal. Be sure people in the support system do not attribute normal trauma responses to the client s developmental disability. In this phase, validation of the seriousness of the experience is important. Be aware that because of developmental delays, even older people with developmental disabilities may respond as children often do, by blaming themselves. Be prepared to counteract this tendency in therapy. Also be prepared to acknowledge the secondary suffering that may occur because of society's response to the trauma or lack of response to the trauma. Throughout this process, be sure to show respect for the client s experience and feelings about the trauma. Phase Two: Safety and Competency The therapist needs to work with the traumatized client and the people who support the client in order to make sure that all aspects of the client s environment are safe environment, including home, school, and the community. Achieving this goal may mean addressing unsafe conditions, which existed prior to the trauma, because until all aspects of the environment are safe, the client will not be able to work on processing the trauma. In order to make the environment safe, the treatment team may have to deal with teasing and bullying at school or in the community. Family issues, such as anger management, may need to be addressed if family issues are making the home feel unsafe. Since many clients with developmental disabilities are involved with multiple agencies, it is important to be sure that representatives of all agencies are involved in a multidisciplinary team for treatment of the trauma. In this way, all team members will use similar language in their interventions as they try to establish safety for the client. It is very important to help the client to feel safe in returning to normal activities and it is important to help the client achieve a normal sleep pattern. 7
During this phase, the therapist also helps the client to move from a place of helplessness to a sense of being in control of the environment again. This movement may involve building memories of a time when the client felt in control and was successful in countering feelings of powerlessness. If the client has had many experiences of feeling out of control due to the developmental disability, the process may need to go back and address a variety of disempowering situations. During this process, the therapist focuses on teaching assertiveness and self-advocacy skills that may run counter to the typical compliance training that people with developmental disabilities receive. Phase Three: Processing the Trauma In this stage, the therapist helps the client to rework the trauma from a place of greater safety, competence and empowerment. In working with clients with developmental disabilities, it is helpful to use concrete metaphors and visual stimuli to help compensate for processing difficulties. Play therapy, art therapy, and social stories are often helpful in restructuring the event and the client s thoughts about the event. During this stage, the therapist should be prepared to address common post trauma issues such as fear of reoccurrence, guilt about the event, loss and grief reactions, and separation anxiety that has been triggered by the trauma (Pynoos & Nader, 1988). The therapist should also be sure to address the aspects of the trauma that are worst for the client. It is important not to assume that you know the answer to this question or can guess based on what the client has spent the most time talking about. Often the issue that is most troubling will not have been discussed directly. Phase Four: Transition Beyond the Trauma In this stage, the therapist helps the client to move beyond the trauma by using the new understanding of what happened, as well as the new competency and self advocacy skills that have been developed. Clients with developmental disabilities need special help in this area, because it may take more work for them to rehearse the skills sufficiently to feel confident in their ability to use 8
them. Until they feel competent in implementing their new skills, they are likely to continue to feel out of control and unready to move beyond the trauma. Discussion People with developmental disabilities are more likely to be exposed to traumatic events and are particularly vulnerable to developing mental illnesses following exposure to traumatic events, due to their reduced resiliency. Therefore, it is extremely important for us to develop effective treatments for this population that are designed to meet their needs following exposure to traumatic events. People with developmental disabilities are just as likely to benefit from psychotherapy as anyone else, provided appropriate adaptations are made to the services they receive. It is our job to continue to work toward providing them with the same type of options for trauma treatment that are available to the non-disabled population. 9
References Avrin, S., Charlton, M., & Tallant, B. (2002). Diagnosis and treatment of clients with developmental disabilities. [Original presentation 1998, revised 2002]. In Aurora Mental Health Center Staff Training Seminars. Baladerian, N.J. (1991). Sexual abuse of people with developmental disabilities. Journal of Sexuality and Disability, 9 (4): 323-335. Blatt, E. R. & Brown, S. W. (1986). Environmental influences on incidents of alleged child abuse and neglect in New York state psychiatric facilities: Toward an etiology of institutional child maltreatment. Child Abuse and Neglect, 10 (2): 171-180. Burrows, H. C. & Kochurka, K. A. (1995). The assessment of children with disabilities who report sexual abuse: A special look at those most vulnerable. In Ney, T. (Ed.), True and False Allegations of Child Sexual Abuse: Assessment and Case Management. New York: Brunner/Mazel, 275-289. Bütz, M. R., Bowling, J. B., & Bliss, C. A. (2000). Psychotherapy with the mentally retarded: A review of the literature and the implications. Professional Psychology: Research and Practice, 31(1), 42-47. Charlton, M. (October, 2002). Relationships: One step at a time. In National Association for Dual Diagnosis Conference Proceedings: 19 th Annual Conference. Kingston, New York: NADD Press. Goldson, E. (2002, July). Maltreatment among children with disabilities. In 14th International Congress on Child Abuse and Neglect. Denver, Colorado. James (1988). In Tharinger, D., Horton, C., & Milleas, S. (1990). Sexual abuse and exploitation of children and adults with mental retardation and other handicaps. Child Abuse and Neglect, 14: 301-312. Mansell, S., Sobsey, D., & Moskal, R. (1998). Clinical findings among sexually abused children with and without developmental disabilities. Mental Retardation, 36 (1): 12-22. Mansell, S., & Sobsey, D. (2001). Counseling people with developmental disabilities who have been sexually abused. Kingston, New York: NADD Press. Pynoos, R. S., & Nader, K. (1988). Psychological first aid and treatment approach to children exposed to community violence: Research implication. Journal of Traumatic Stress, 1(4), 445-473. Sobsey, D. (1996). Relative victimization risk rates: people with intellectual disabilities (unpublished manuscript). Sobsey, D. & Doe, T. (1991). Patterns of sexual abuse and assault. Sexuality and Disability, 9 (3): 243-259. Sobsey, D., & Varnhagen, C. (1989). Sexual abuse and exploitation of disabled individuals. In C. R. Bagley & R. J. Thomlison (Eds), Child Sexual Abuse: Critical Perspectives on Prevention, Intervention and Treatment (pp. 203-216). Toronto, Canada: Wall & Emerson, Inc. Sullivan, P. & Knutson, J. (2000). Maltreatment and disabilities: A population-based epidemiological study. Child Abuse & Neglect, 24 (10): 1257-1273. Vasterling, J. J., Duke, L. M., Brailey, K., Constans, J. I., Allain, A. N., & Sutker, P. B. (2001). Attention, learning, and memory performances and intellectual resources in Vietnam veterans: PTSD and no disorder comparisons. Neuropsychology, 16(1). Westat, Inc. (1991). A Report on the Maltreatment of Children with Disabilities, U. S. Department of Health and Human Services. Washington, D. C. 10
Authors Note The Adapted Treatment Work Group of the collected some of the information included in this presentation. Chairperson: Margaret Charlton. Work Group Members: Anne Traverne, Matthew Kliethemes, Brian Tallant, Ric Durity, Amy Oxman, Amy Shadoin, Amy Tishelman, Barbara Boat, Greg Taliaferro, Pamela Marshall and Bill Harris. 11