Rebecca L. Bosek M.S., L.M.F.T., L.P.C. Karen M. Ward, Ed.D.
People with developmental disabilities are frequently victims of sexual abuse and assault. Their abuse has been described as severe, chronic, and may go undetected for lengthy periods of time (Mansell & Sobsey, 2001; Sobsey, 1994). Even when sexual abuse and sexual assault are suspected, the authorities are seldom notified (Corin, 1984/1986; Sorensen, 2001). Few people who commit sexual offenses against people with developmental disabilities are actually convicted in the criminal justice system (Sobsey, 1994). Due to a lack of intervention, abusers often have access to and commit sexual offenses against multiple victims (McCarthy, 2000). The result is that people with developmental disabilities are vulnerable to ongoing sexual victimization and exploitation throughout their lifetimes.
Women with developmental disabilities who have been sexually victimized exhibit a variety of abuse-related symptoms. They may experience emotional distress and have personality disturbances (Fresco, Philbin, & Peters, 1993), including symptoms of
post-traumatic stress, depression, and somatoform disorders (Stromsness, 1993). Possible behavioral indicators include changes in daily routines, restricted social contacts, and onset of aggression (Baladerian, 1999; Hingsburger, 1995). These women may avoid all sexual contacts or have multiple sexual partners (Cruz, Price-Williams, & Andron, 1988). They may become involved in dating and partnered relationships with people, who exploit them emotionally, physically, and sexually (Ryerson, 1984; Stromsness, 1993). Finally, some women engage in inappropriate sexual behavior or sexual offending directed against others (Ward & Bosek, 2002).
Many women do not have access to needed services. Professionals may be reluctant to provide assessment, intervention, or treatment to people with developmental disabilities, for a variety of reasons. There may be concerns about intellectual functioning. Some professionals do not offer services due to their belief that people with developmental disabilities do not possess adequate verbal skills, lack emotional insight, and either do not suffer trauma or will forget about it (Ryan, 1994). Others lack the necessary training to adapt existing treatment strategies to meet the needs of people with developmental disabilities (Mansell, Sobsey, & Calder, 1992). For any combination of reasons, services and treatment are often lacking (Burke & Gilmour, 1996; Sobsey, 1994: Sobsey & Doe, 1991). Even when services are offered, they are frequently inadequate to meet the needs of victims (Mansell & Sobsey, 2001). The result is that women with developmental disabilities who have been sexually victimized are either not served or underserved.
Little has been written about treatment strategies for women with developmental disabilities and mental illness, who have been sexually victimized and remain at risk. This article describes an approach that has been used successfully with women who are dually diagnosed.
In 1998, the Center for Psychosocial Development began providing community-based support services with women who are dually diagnosed and exhibit high-risk sexual behaviors. This agency is the non-profit service arm of the University of Alaska Anchorage-Center for Human Development-A University Center for Excellence on Developmental disAbilities Education, Research, and Services (UCDD). Staff from this agency, along with service providers representing mental health, residential services, and vocational concerns work collaboratively to support women to live safely in community settings.
This service assists women to keep themselves safe, and when they have histories of inappropriate sexual behavior or sexual offending directed against others, to reduce the risk to potential victims and the community. The key components of the approach are risk assessment, skill development, risk management support planning, specialized clinical case management, and supervision and monitoring strategies.
Description of the Population
To date, 26 women who are dually diagnosed (i.e., mental retardation and mental illness) have participated in community-based support services. Slightly over a third of them (35%) have Fetal Alcohol Spectrum Disorders (FASD). The women range in age from 19-46 years old. Half of the women (50%) have histories of intrafamilial childhood sexual abuse, and a larger number (58%) have experienced extrafamilial childhood sexual abuse. The majority of the women (88%) have been sexually assaulted during adulthood. Most of the women live in supported living arrangements (88%), while a smaller number (12%) live independently in their own homes. About a third of the women (31%) hold jobs in the community. Some of the women (38%) have unsupervised access to the community, while the rest (62%) require varying levels of supervision.
All women receiving services participate in a Risk Assessment. The purpose of the assessment is to determine: 1) overall functioning, 2) history of victimization, high-risk sexual practices, and inappropriate sexual behavior or sexual offending, and 3) need for services based on preferences and treatment recommendations.
Often, little information is available regarding the history of sexual abuse or high-risk sexual practices. To obtain an accurate understanding of the nature and extent of the sexual abuse, extensive background information is gathered. Examples of records reviewed include psychological and psychiatric evaluations, reports from mental health agencies, incident reports from agencies providing residential services, as well as school, vocational, and legal records.
In addition to reviewing records, information is gathered from conversations with the women. Personal histories are obtained, based upon information that they are willing to share. In some cases, interviews are conducted with agency staff, guardians, and parents in order to obtain necessary information.
As part of the assessment process, several formal assessment instruments are administered. The Vineland Adaptive Behavior Scales (Sparrow, Balla, & Cicchetti, 1984) is used to gather information about overall adaptive behavior. The Reiss Screen for Maladaptive Behavior (Reiss, 1994) is useful for determining whether the women are displaying mental health symptoms. The Emotional Problems Scales (Prout & Strohmer, 1991) contain scales filled out by professionals, as well as a self-report version. The results provide information about the women's current mental health symptoms and maladaptive behavior, including sexual maladjustment. In some cases, the Trauma Symptom Inventory (Briere, 1995) is used to determine the presence of trauma-related symptoms. Finally, the Socio-Sexual Knowledge and Attitude Test (Wish, McCombs, & Edmonson, 1980) assesses sexual knowledge, along with attitudes regarding social and sexual practices.
The obtained information forms the basis of a Risk Assessment. The format for the written report consists of identifying information, referral questions, a brief history, psychiatric services/collateral information, personal safety issues, history of inappropriate social or sexual behaviors or sexual offending, test results, a summary, and recommendations for services.
Skill Development and Service Options
Depending upon the results of their Risk Assessment, the women are offered a variety of service options. Two types of psychosocial skills groups are offered. The first, Personal Safety Planning Groups are for women with histories of sexual victimization, who remain at risk. The second, Behavioral Risk Management Groups are for women with histories of sexual victimization, who remain at risk but, additionally, have histories of inappropriate sexual behavior or sexual offending directed against others. Also, Time-Limited Socio-Sexual Skill Groups are for women who have previously received treatment for sexual abuse, but require skill training. Individualized Home-Based Services are provided for women whose intellectual functioning, mental health symptoms, or behavioral issues preclude them from participation in any of the groups.
The two types of psychosocial skills groups are held weekly and last for 1.5 hours. Socio-sexual skill groups are offered weekly for a specified number of weeks, and sessions typically last for one hour. Home-based services are negotiated with the woman and her care provider, and decisions regarding the number of meetings and session length are based on presenting issues and identified needs.
Personal Safety Planning Groups
Personal Safety Planning Groups focus on risk reduction and personal safety strategies. Examples of the behaviors that these women display include: 1) giving out personal information to and taking rides from strangers, 2) talking about personal sexual issues in public, 3) being partially dressed in public, and 4) dating dangerous men, including convicted sex offenders.
Women in this group learn to take specific actions, should they find themselves in risky situations. Key themes covered in this group include: 1) trust and self-esteem, 2) making social connections and decreasing isolation, 3) dealing with feelings in self and others, 4) developing and implementing personal safety strategies, 5) establishing boundaries and improving assertiveness skills, and 6) learning socio-sexual skills. Strategies for healing from past abuse are addressed, when women indicate they want to process these issues. Finally, women learn to place responsibility for sexual victimization on the perpetrator, along with specific reporting steps they can take, should they be sexually victimized in the future.
Behavioral Risk Management Groups
Behavioral Risk Management Groups focus on risk reduction, personal safety strategies, and taking responsibility to eliminate access to potential victims. Examples of the behaviors these women exhibit include: 1) making harassing telephone calls or writing unwanted sexually explicit letters, 2) touching self sexually in public settings, 3) pursuing dating relationships with underage children, and 4) sexually offending against underage children.
In addition to the topics covered in the Personal Safety Planning Group, women in these groups receive specialized interventions for inappropriate sexual behavior or sexual offending directed against others. Some of the topics that are addressed include: 1) the relationship between sexual abuse and inappropriate sexual behavior or sexual offending, 2) acknowledgement and personal responsibility for sexual behavior, 3) how feelings and thinking contribute to inappropriate sexual behavior or sexual offending, 4) high-risk situations that could lead to inappropriate sexual behavior or sexual offending and the use of coping strategies to avoid or escape them, and 5) the social and legal consequences for inappropriate sexual behavior or sexual offending.
Time-Limited Socio-Sexual Skill Groups
Time-limited socio-sexual skill groups focus on skill development. Examples of skill deficits include: 1) incorrect terms to refer to body parts, 2) lack of knowledge about birth control and safe sex practices, 3) social isolation, due to inability to develop friendships, and 4) lack of understanding of consent, equality, and intimacy in dating relationships.
Topics for groups are obtained from a variety of sources. They include the women, parents, residential staff, and vocational providers. Some of the topics covered during time-limited socio-sexual skill groups are sex education and sexuality, friendships and dating, boundaries, and personal safety.
Individualized Home-Based Services
Women referred for this service focus on individualized issues. Examples of behaviors these women display that preclude their participation in groups include: 1) cursing and swearing at peers, 2) engaging in self-mutilation, and 3) exhibiting predatory sexual behavior toward other women.
The women participate in services that are carefully designed to meet their needs. Topics are developed with the woman and her team, and addressed during home-based sessions with the woman and her care provider. Examples of topics that have been covered include: 1) proper names as a means to address others, 2) refusal skills when strangers offer rides, and 3) appropriate clothing in public. Between sessions, the woman and her care provider practice the targeted skill. Feedback about skill acquisition is obtained during subsequent sessions. Also, individualized home-based services are sometimes used to transition women to a group. In this case, sessions are used to pre-teach the skills necessary for group participation.
Risk Management Support Planning
All women have individualized Risk Management Support Plans, which they help to develop. These plans outline: 1) risky situations, 2) coping strategies to keep them and others safe, 3) staff support strategies, documenting specific actions staff can take to assist the women, and 4) tracking and monitoring mechanisms so outcome measures are obtained. Supervision and monitoring recommendations are also outlined. Finally, goals and objectives that the women are working on and have achieved are recorded. This strategy provides a means for the women to know what they are doing now, as well as what they have accomplished. The women regularly review their Risk Management Support Plans during group sessions and with their care provider.
Specialized Clinical Case Management
All women receiving services participate in monthly home-based visits. These meetings provide another opportunity for a group co-facilitator, the woman, and her care provider to review the Risk Management Support Plan. Also, during these visits, the women have a chance to discuss how they feel about services, including suggestions for modifying strategies or expectations. Finally, outcome data is collected and reviewed. Periodically, formal case reviews are held with the entire treatment team to document progress.
As a part of specialized clinical case management, the women have opportunities to practice learned skills during community activities. This is accomplished through paired and group activities. The co-facilitators assist the women to plan and implement supervised activities with other group members. After the activity, the co-facilitators are available for feedback and to discuss concerns. For example, after completing sessions designed to increase friendship-making skills, the women participated in several activities including taking a walk, going out for pizza, and having a group picnic.
Every six months, the women participate in feedback groups. These groups are designed to provide the women with opportunities to discuss whether they feel services are beneficial. Also, the women provide feedback to the co-facilitators about topics they would like to see addressed during future groups.
Supervision and Monitoring Strategies
The women have varying degrees of staff supervision depending upon their intellectual functioning, mental health issues, behavioral issues, and risk to self and others. Women with histories of inappropriate sexual behavior or sexual offending directed against others often have continuous supervision. This heightened level of supervision is necessary, until the women learn to self-manage their sexual behavior.
Monitoring strategies are another way that women with histories of inappropriate sexual behavior or sexual offending can live safely in community settings, while reducing the risk to potential victims. Examples of monitoring strategies that have been used with the women include: 1) silent alarms on windows and doors to alert care providers when women are leaving, 2) restricted access to the telephone and Internet, when women are pursuing sexual relationships with underage children, and 3) work transfers, when women have sexually harassed co-workers.
Outcome Measures and Outcomes
Outcome measures include pre-post tests to determine whether knowledge has been retained. Care providers and other agency staff members provide written observations about the women's behavior in the home, at work, and in the community, to determine whether learned skills have generalized to other settings.
Since 1998, twenty-six women have received services through the Center for Psychosocial Development. During this time, there have been no substantiated cases of sexual victimization directed against the women. None of the women have been questioned or charged with any sexual crimes directed against underage children or vulnerable peers. These outcomes support the general efficacy of the approach.
Community-based support services, is a flexible approach based on risk assessment, skill development, risk management support planning, specialized clinical case management, and supervision and monitoring strategies. It provides a means for women who are dually diagnosed to live safely in community settings, while reducing the risk to potential victims and the community.
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