B R AIN INJURY professional vol. 7 issue 1
The official publication of the North American Brain Injury Society
Brain Injury and
Sexuality
Integrating Sexuality into Traumatic Brain Injury Rehabilitation Disability and Sexual Expression: Debunking the Myths and Working to Break Down Barriers Adolescence, Brain Injury, and Sexuality: Promoting Sexual Health Sexual Disinhibition and Social Skills: Behavioral Interventions for Persons with TBI A Closer Look at Sexual Intimacy after Brain Injury
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contents departments 4 Editor in Chief’s Message 6 Guest Editor’s Message 28 Non-profit News
BRAIN INJURY professional vol. 7 issue 1
The official publication of the North American Brain Injury Society
north american brain injury society
chairman Robert D. Voogt, PhD treasurer Bruce H. Stern, Esq. family Liaison Skye MacQueen executive director/administration Margaret J. Roberts executive director/operations J. Charles Haynes, JD marketing manager Joyce Parker graphic designer Nikolai Alexeev administrative assistant Benjamin Morgan administrative assistant Bonnie Haynes
brain injury professional
30 Legislative Round-up B R A I N I N J U RY professional vol. 7 issue 1
The official publication of the North American Brain Injury Society
Brain Injury and
Sexuality
publisher J. Charles Haynes, JD Editor in Chief Ronald C. Savage, EdD Editor, Legislative Issues Susan L. Vaughn founding editor Donald G. Stein, PhD design and layout Nikolai Alexeev advertising sales Joyce Parker
EDITORIAL ADVISORY BOARD
Integrating Sexuality into Traumatic Brain Injury Rehabilitation Disability and Sexual Expression: Debunking the Myt hs and Working to Break Down Barriers Adolescence, Brain Injury, and Sexuality: Promoting Sexual Health Sexual Disinhibition and Social Skills: Behavioral Interventions for Persons with TBI A Closer Look at Sexual Intimacy after Brain Injury
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features
Michael Collins, PhD Walter Harrell, PhD Chas Haynes, JD Cindy Ivanhoe, MD Ronald Savage, EdD Elisabeth Sherwin, PhD Donald Stein, PhD Sherrod Taylor, Esq. Tina Trudel, PhD Robert Voogt, PhD Mariusz Ziejewski, PhD
editorial inquiries 8 Integrating Sexuality into Traumatic Brain Injury Rehabilitation by Angelle M. Sander, PhD 14 Disability and Sexual Expression:
Debunking the Myths and Working to Break Down Barriers By Anne Ulrich, OTR/L, CBIS and Mary Newton, LMSW, PhD Candidate, CBIS 18 Adolescence, Brain Injury, and Sexuality:
Promoting Sexual Health by Barbara Barton, PhD, MSW and Mitchell Tepper, PhD, MPH 22 Sexual Disinhibition and Social Skills:
Behavioral Interventions for Persons with TBI by Michael P. Mozzoni, PhD/BCBA-D, Austin Errico, PhD & Tina M. Trudel PhD 26 A Closer Look at Sexual Intimacy after Brain Injury by Tina M. Trudel, PhD
Managing Editor Brain Injury Professional PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787 Website: www.nabis.org Email: contact@nabis.org
advertising inquiries Joyce Parker Brain Injury Professional HDI Publishers PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787
national office
North American Brain Injury Society PO Box 1804 Alexandria, VA 22313 Tel 703.960.6500 Fax 703.960.6603 Website: www.nabis.org Brain Injury Professional is a quarterly publication published jointly by the North American Brain Injury Society and HDI Publishers. © 2009 NABIS/HDI Publishers. All rights reserved. No part of this publication may be reproduced in whole or in part in any way without the written permission from the publisher. For reprint requests, please contact, Managing Editor, Brain Injury Professional, PO Box 131401, Houston, TX 77219-1400, Tel 713.526.6900, Fax 713.526.7787, e-mail mail@hdipub.com
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editor in chief’s message
Ronald Savage, EdD
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Friendships. Relationships. Love. Intimacy. Sex. This list could go on for several pages when we think about the numerous and complex issues facing people with brain injuries, as well as their family and friends, when we discuss sexuality. While professionals need to focus upon important rehabilitation services and long term supports for individuals with brain injuries, the critical issues of “life” are sometimes left out of our treatment services due to funding and/or knowledge base. Dr. Tina Trudel has created another excellent issue of Brain Injury Professional that presents and discusses the critical “life” issue of sexuality after brain injury. As authors Barton and Tepper state in their article, “Sexuality is a biopsychosocial relational and cultural construct. Sexual development includes physiological development, psychological development, social development and development of sexual knowledge.” And we thought brain injury rehabilitation was complex. And, as Dr Sandler notes in her article, “…addressing sexuality during rehabilitation may be difficult for many reasons. First, rehabilitation professionals often have minimal or no knowledge regarding the potential impact of TBI on sexual functioning. In contrast to persons with spinal cord injury, there is no obvious linkage between injury to the brain and sexual behavior.” When we examine treatment methods and myths, authors Mozzoni, Errico and Trudel discuss particular behavioral interventions that have proven successful with sexual disinhibition and social skills and authors Ulrich and Newton take an indepth look at the myths surrounding sexuality and people with disabilities. As we all know, it is a combination of multiple skills sets carefully integrated into
everyday services and supports that will most likely prove to be the most effective interventions. Sexuality is no exception. As multi-faceted a topic as sexuality is, we can address specific needs and desires for individuals with brain injuries. NABIS wants to thank Dr. Tina Trudel for tackling such a complex topic. Dr. Trudel is on the Board of Directors for NABIS and is recognized nationally and internationally for her exemplary work on behalf of individuals with brain injuries and her tireless efforts to advance the field of brain injury rehabilitation. We thank Dr. Trudel for serving as our Guest Editor of BIP and our other authors for providing us with an issue that is both meaningful and thought provoking. Also, don’t forget upcoming NABIS events and activities, including our three 2010 conferences! First, we are delighted to be partnering with the Alaska Brain Injury Network on the first Alaska Brain Injury Conference which will be held July 28-30, at the Hotel Captain Cook in Anchorage. Second, NABIS is partnering with the National Association of State Head Injury Administrators on an exciting combined educational program entitled Partnering in the Twin Cities that will take place October 6-8 in Minneapolis, MN. Last but not least, we are working on our “must attend” event for attorneys involved in brain injury: The 23rd Annual Conference on Legal Issues in Brain Injury that will take place October 7-9 in Minneapolis. Of course NABIS members are entitled to a significant discount on all of these meetings (and indeed other conferences including the IBIA World Congress on Brain Injury) making membership in our Society a true bargain. To join NABIS or to learn more, visit www. nabis.org. Ronald Savage, EdD
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guest editor’s message
Tina Trudel, PhD It was with great pleasure that I undertook this opportunity to serve as guest editor for the Brain Injury Professional Special Issue on Sexuality. Sexuality is a highly integrated, complex activity with physical, cognitive, behavioral, psychosocial, religious and cultural elements. One brief series of articles surely cannot do the topic justice, but this publication will hopefully contribute to a more thorough, genuine dialogue about sexuality in the BI rehabilitation community. In the early 1980’s I was privileged to work for author and scholar Dr. Adrienne Asch, who facilitated my introduction to the disability rights movement. Disability rights activism was the newest frontier in the evolving universe of human liberation, seeking human dignity, civil rights and quality of life across our diverse landscape - be that racial, cultural, gender, sexual orientation, age, religious, political and/or disability status. From the earliest days of this movement, efforts were made to secure integrated education, accessible housing, equal vocational opportunity and full community participation. Later, the field of brain injury rehabilitation followed a parallel course – and yet in both instances, sexuality has often been the ‘elephant in the room’. The history of sexuality and disability (particularly related to cognitive impairment) is one of forced abstinence, punishment, sterilization and denial. Social and theoretical models have prohibited sexual activity both under ‘Innocence Models’ (we must protect people with disabilities from the sexually depraved public) to ‘Degenerate Models’ (we must protect the public 6
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from the sexually depraved people with disabilities). The outcome for many persons with BI and other disabling conditions is that sexuality became shrouded in secrecy, nonexistent or a negative experience – anything but a celebration of love or healthy experience of bodily pleasure. Freud reminded us that, “Love and work are the cornerstones of our humanness.” Due to tradition, policy, reimbursement, comfort level and many other reasons, brain injury rehabilitation focuses heavily on one side of our humanness, that of work. We then wonder why individuals whom we serve are at times dissatisfied with their outcomes, suffer depression, complain of loneliness and experience diminished life satisfaction as romantic love proves to be a daunting endeavor without adequate preparation. Writing in 1992, disability rights activist Anne Finger poignantly stated, “Sexuality is often the source of our deepest depression; it is also the source of our deepest pain. It’s easier for us to talk about – and formulate strategies for changing - discrimination in employment, education and housing than to talk about our exclusion from sexuality and reproduction.” (1) Two decades later, we take a broad look at sexuality after BI in this edition of the Brain Injury Professional, each article merely a facet of this complex gem of life. Love, romance, desire, intimacy, partnership, pleasure, eroticism, sex – while we attempt to write scholarly, scientific works, history shows us this experience is often best described by the poets who touch upon its universal, transcendent and timeless nature:
Touched by an Angel We, unaccustomed to courage exiles from delight live coiled in shells of loneliness until love leaves its high holy temple and comes into our sight to liberate us into life. Love arrives and in its train come ecstasies old memories of pleasure ancient histories of pain. Yet if we are bold, love strikes away the chains of fear from our souls. We are weaned from our timidity In the flush of love’s light we dare be brave
And suddenly we see that love costs all we are and will ever be. Yet it is only love which sets us free. - Maya Angelou
Sonnet XCV: Who ever desired each other as we do Whoever desired each other as we do? Let us look for the ancient ashes of hearts that burned, and let our kisses touch there, one by one, ‘til the flower, disembodied, rises again. Let us love that Desire that consumed its own fruit and went down, aspect and power, into the earth: We are its continuing light, its indestructible, fragile seed - Pablo Neruda
My deepest thanks and appreciation to colleagues Dr. Angelle Sander for her detailed, thoughtful overview of what we know about sexuality after TBI and the implications for treatment providers; to Drs. Barbara Barton and Mitch Tepper, longtime leaders in the field of sexuality and disability, for their discussion of adolescents’ coming of age with TBI; to Anne Ulrich and Mary Newton for their frank presentation of sexual expression and the means of overcoming barriers to access; and to Drs. Mike Mozzoni and Austin Errico for addressing the serious challenge of post-TBI sexual disinhibition in a positive, personcentered, behaviorally sound manner. I am also appreciative of the opportunity to contribute a brief piece highlighting the challenges of successful intimacy. Sexuality is a life affirming gift that enriches all of us. How we share love, experience passion and engage in sexual activity are unique, vital aspects of who we are. Brain injury rehabilitation seeks to support and empower each individual to reach their full human potential, a potential that rests on the cornerstones of our capacity to work and to love (not necessarily in that order…). In closing, I hope this issue is a source of information and inspiration, fostering a deeper appreciation of the complexities and commonalities of sexuality for all of us. Tina Trudel References
1.
Finger, A. (1992). Forbidden fruit. New Internationalist, Issue 232. Available at http://www.newint.org/issue233/ fruit.htm
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Integrating Sexuality into Traumatic Brain Injury Rehabilitation by Angelle M. Sander, PhD
Sexuality is an integral part of the human experience. Feeling sexually attractive to others contributes to self-esteem and quality of life. In essence, sexuality helps define who we are as people. Therefore, the loss of sexual functioning that often follows traumatic brain injury (TBI) can be devastating for the person with injury, as well as for their intimate partner(s). The difficulties can be exacerbated by the fact that persons with TBI and their partners often receive minimal to no information on potential changes in sexual functioning. Persons with TBI have reported that sexuality is an area in which they need guidance, but is often overlooked by rehabilitation professionals (Rankin, 1998). As a holistic field, rehabilitation should attend to all aspects of life functioning including sexuality. However, addressing sexuality during rehabilitation may be difficult for many reasons. First, rehabilitation professionals often have minimal or no knowledge regarding the potential impact of TBI on sexual functioning. In contrast to persons with spinal cord injury, there is no obvious linkage between injury to the brain and sexual behavior. Thus, while many rehabilitation programs have sexual education protocols for persons with spinal cord injury, few have such programs for persons with TBI. Second, rehabilitation staff may perceive sexuality as irrelevant compared to other important issues, such as walking, swallowing, toileting, and dressing. It may seem inappropriate to bring up the topic of sexuality when these other needs have so much more salience. Indeed, some family members of persons with brain injury may not be open to discussing sexuality during this time. The value systems 8
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of staff, and their own comfort with sexuality, can also play a role. Some staff may simply feel embarrassed talking about sexuality with strangers. Others may worry that they will embarrass the client or their family members by bringing it up, deciding to discuss it only if they are asked. A perception of the person with TBI as child-like may also decrease the willingness of rehabilitation staff to address sexuality. Some persons with TBI will engage in behaviors that appear child-like, such as frequent crying, emotional dependence, and impulsivity. Rehabilitation staff may assume that persons with these behaviors would not be interested in sex or may make value judgments that such individuals are not interpersonally appropriate for experiencing sex. Failure to address sexuality during rehabilitation may have harmful effects on the person with TBI and their partners. The goal of the current article is to increase the comfort level of rehabilitation professionals in educating persons with TBI and their family members about sexuality. To meet this goal, information will be provided regarding the type and cause of sexual problems after TBI. Suggestions for addressing sexuality during rehabilitation will be offered, as well as potential referrals that can be made for treatment.
Type of Sexual Problems in Persons With TBI: Research has shown that persons with TBI have a variety of problems with sexual functioning and/or decreased satisfaction with sexual functioning after injury. Decreased sex drive or desire has been reported by both men and women (Aloni et al., 1999; Hibbard et al., 2000; Kreutzer & Zasler, 1989).
While decreased sex drive is more common, some persons with TBI have increased sex drive and hypersexual behavior (Davis & Schneider, 1990; Zencius et al., 1990). Hypersexual changes can include inappropriate intimate touching of others, exposure of genitals to unwilling others, engaging in persistent unwanted sexual advances, or engaging in inappropriate sexual talk (Zencious et al., 1990). While these behaviors rarely occur after TBI, they can be extremely distressing for rehabilitation staff and family members. Over time, they can result in social isolation for the person with TBI. Decreased sexual arousal is commonly reported after TBI. For men, problems with arousal can be manifested as decreased ability to obtain or maintain an erection (Aloni et al., 1999; Garden, Bontke, & Hibbard et al., 2000; Hoffman, 1990; Kreuter et al., 1998; Kreutzer & Zasler, 1989). For women, decreased vaginal lubrication can be indicative of problems with arousal (Hibbard et al., 2000). Difficulty achieving orgasm has also been reported for both males and females (Garden, Bontke, & Hoffman, 1990; Hibbard et al., 2000; Kreuter et al., 1998; Kreutzer & Zasler, 1989). Males have been noted to experience ejaculation difficulties (Sabhesan & Natarajan, 1989; Sandel et al., 1996). Women have also reported less energy for sex, pain during sexual activity, decreased sensation, decreased ability to masturbate, and greater difficulty with positioning and movement during sex (Hibbard et al., 2000). Even when the performance of sex is not affected, pleasure or satisfaction with the sexual experience can be decreased. For some, opportunities for sexual relationships are reduced or completely lost after injury, due to social isolation. For others, intimacy or emotional closeness is difficult to achieve, reducing the overall quality of the sexual experience. This can contribute to negative relationship changes, to depression, and to reduced quality of life.
Causes of Sexual Difficulties in Persons With TBI Primary Causes: Primary causes refer to those that are a direct result of damage to the brain or to disruption of systems dependent on the brain, such as the endocrine and neurochemistry systems. The frontal and temporal lobes, which are involved in regulating sexual behavior, are frequently damaged during TBI as a result of their proximity to bony protuberances of the skull. Depending on the areas of the frontal or temporal lobes that are damaged, the result could be apathy and decreased initiation of sexual behavior or disinhibited and impulsive sexual behavior. TBI also disrupts the connections of the frontal and temporal lobes with subcortical structures, including the thalamus, hypothalamus, and hippocampus. Damage to these areas can also lead to a disruption of sexual functioning. In addition, brain injury results in disruption of the neurochemistry of the brain. Neurochemicals, such as dopamine and serotonin, are involved in regulating sexual behavior (Horn & Zasler, 1990; Sandel, Delmonico, & Kotch, 2007). Change in the neuroendocrine system is another potential cause of sexual dysfunction after TBI Horn & Zasler, 1990; Sandel, Delmonico, & Kotch, 2007). The neuroendocrine system is what regulates hormone levels, including testosterone, estrogens, and progesterones. This system includes the hypothalamus, the pituitary gland, and the gonads, which are the testes in men and the ovaries in women. The hypothalamic-
pituitary-gonadal system requires constant communication and feedback between the different parts of the system to regulate hormone levels. Disruption in these hormone levels can impact sexual functioning.
Secondary Causes: Secondary causes of sexual dysfunction refer to changes in physical, cognitive, emotional/behavioral, and social functioning that are directly related to brain injury and have secondary effects on sexual functioning. Sexual problems for persons with TBI can be due to an interaction between physical, cognitive, emotional, and behavioral changes (Aloni & Katz, 2003). Physical changes can include spasticity, hemiparesis, ataxia, movement disorders, and decreased balance (Gervasio & Griffith, 1999). These changes can result in difficulty with body positioning and pain during sexual activity. Sensory deficits can also contribute to decreased sexual functioning, particularly with regard to arousal. A variety of cognitive impairments common after TBI can impact sexual behavior. Impairments in attention and concentration can impair sexual arousal and ability to sustain attention during a sexual encounter (Aloni & Katz, 2003). Impaired initiation can directly impact the sexual relationship and frequency of sexual activity (Gervasio & Griffith, 1999). Impaired social communication abilities can have a devastating impact on sexual functioning. Persons with TBI often have decreased empathy toward others, decreased ability to benefit from nonverbal feedback, and difficulty learning from social experience (Marsh, 1999). These impairments have a negative impact on social relationships, including those of a sexual nature. Persons with deficits in planning and goal-directed behavior may not be able to accomplish the planning and actions necessary to result in opportunity for sexual activity (Gervasio & Griffith, 1999). Impairments in cognitive flexibility and abstract thinking may limit a person’s ability to fantasize, which can be important for sexual arousal. Perseveration may result in excessive demands for sexual activity, which can be off-putting for partners. Memory impairments can contribute to sexual difficulties by limiting the ability of the person with injury to recall recent sexual encounters or future social dates (Blackerby, 1990). Emotional and behavioral changes may also impact sexual functioning. Depression occurs in 14 to 61% of persons with TBI, and can inhibit sexual desire and arousal (Kreutzer, Seel, & Gourley, 2001; Dikmen et al., 2004). Family members of persons with TBI have long described emotional and personality changes in the person with injury, including child-like dependent behaviors and a tendency toward self-centeredness (Lezak, 1978). These changes can result in reduced attractiveness to partners. For some persons with injury, apathy and decreased initiation interfere with sexual functioning (Aloni & Katz, 2003). For others, disinhibition and difficulty in self-monitoring can result in extreme emotional changes, such as impulsivity, aggression, and loss of control of behavior resulting in hypersexuality (Blackerby, 1994). Changes in feelings of attractiveness and poor body image in the person with TBI can impact his/her sexual desire and arousal (Aloni & Katz, 2003). Cognitive and emotional/behavioral changes in persons with TBI can have a devastating impact on social relationships. High divorce rates and dissatisfaction and dysfunction within the marital relationship have been frequently reported (Wood, Liossi, & Wood, 2005). For single persons, social isolation is a major BRAIN INJURY PROFESSIONAL
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obstacle to sexual functioning (Strauss, 1991). Decreased selfesteem can result in the person with injury feeling inadequate and unwilling to initiate social activities that could result in opportunities for sexual expression (Valentich & Gripton, 1984). A variety of drugs that are typically prescribed to ameliorate cognitive and emotional changes after TBI, as well as to regulate sleep-wake cycles, are known to have negative side effects on sexual functioning (Gervasio & Griffith, 1999). Anticonvulsants, such as carbamazepine and phenytoin, can result in decreased sex drive and impotence. Antidepressant drugs typically result in decreased sex drive, erectile and ejaculatory difficulties, and delayed orgasm for females. Anticholinergic medications, such as scopolamine, can reduce sex drive and result in impaired erections and ejaculation. Serotonergic agonists typically prescribed for sleep disturbance, such as trazodone, can also decrease sex drive.
Addressing Sexuality In the Rehabilitation Setting A first step in addressing sexuality within the rehabilitation setting is to increase the sensitivity and comfort level of the treatment staff. One easy and inexpensive way to accomplish this is to sponsor an in-service by someone with expertise in the area of sexuality and brain injury. The in-service can provide information similar to what is found in this article, including type and causes of sexual dysfunction, how to address it in the rehabilitation setting, and recommended treatments. As a follow-up to the in-service, your rehabilitation team can hold one or two sessions where staff members explore their feelings about discussing sexuality with clients and family members. Role plays can be used to practice responses to questions about sexuality that may be asked by clients or family members (e.g., “When is it O.K. for us to start having sex?”). Team members can pair up in small groups and practice broaching the topic of sexuality with clients and their family members, and answering questions. It takes team commitment to address sexuality during rehabilitation. If everyone thinks of it as someone else’s responsibility, then it is unlikely to happen. Effectively addressing sexuality requires that it be formally included in the rehabilitation process. Some members of the rehabilitation team may not be comfortable discussing sexuality, even with practice. What may work best is to assign one or two “point people” for education on sexuality. Questions regarding sexuality should be integrated into at least one formal assessment (e.g., social work or physical therapy). Some possible questions include: “Do you have any questions or concerns about sexual functioning that you would like answered?”; “Would you like to be sexually active when you go home?”; “Were you having any problems with sexual functioning prior to your injury?” In addition to sexuality being addressed as part of a formal assessment, one or two people on the unit could be appointed to provide general education about sexuality to persons with TBI and their caregivers. These should be treatment team members who feel very comfortable broaching the topic of sexuality. An alternative is to assign one discipline (e.g., physical therapy) to provide education on sexuality. However, this may result in diffusion of responsibility, possibly leading to less consistent and quality education for clients and caregivers.
When Should Sexuality Be Addressed? The question of when to provide education on sexuality is not as simple as it may appear. During a focus group conducted at 10 BRAIN INJURY PROFESSIONAL
TIRR’s Brain Injury Research Center, we asked a group of persons with TBI and their caregivers when they would have liked to receive information regarding sexuality. There were two groups of responses. The first group of people said that they would have appreciated receiving the information early in the rehabilitation process, prior to being discharged home. The second group explained that they would not have been ready to process information about sexuality during the rehabilitation stay. During this time, they had been focused on relearning basic activities, such as walking, swallowing, and toileting. They indicated that sexuality did not appear relevant at that time. Thus, program participants and their family members may be more or less open to receiving education on sexuality during rehabilitation. They also have their own values and comfort levels, which may interfere with their ability to process information. Unfortunately, their time in rehabilitation may be the only window of opportunity for them to receive education. Later, when they are at home, interested in being sexually active, and have questions or problems, they may have no access to professionals. Given this dilemma, it is recommended that brief written education on sexuality be provided to all persons with TBI during their rehabilitation stay. Those who are not interested in reading them at the time may refer to them later, as needed. Everyone should be offered the opportunity to receive more detailed education from the rehabilitation team “point person.” The following may be a useful segues to open the topic of sexuality for discussion. “I know that you are dealing with a lot right now, and sex may be the last thing on your mind. However, I want to tell you that brain injury can affect sexual functioning. If you would like some information on this, I can provide it to you. If you are not ready to talk about it now, that’s O.K. I can give you some reading material to take home. You can also ask your doctor or other rehabilitation professional about it when you do have questions or want more information.”
Who Should Information Be Provided To? The question of who to give information to is not always clear. A sensible guideline is that the person with injury should always be the recipient of information on sexuality. However, persons with TBI often have impairments in attention, processing speed and memory that make them less likely to benefit from education. In these cases, it is recommended that they be provided with written materials that they can take home and refer to as needed. Even when the person with injury can understand and remember the information, education of the spouse or intimate partner is also recommended. The situation becomes more awkward when the caregiver is a parent. If the person with injury cannot process or retain the information, written materials should be given to the parent, with instructions to share them with the person with injury when appropriate. Unfortunately, parents and adult children may have dynamics that may interfere with open communication about sexuality. The rehabilitation team cannot control these dynamics or how they may impact the parents’ willingness to share the educational materials with their (adult) child. In spite of this, providing the materials to the parent allows an opportunity for the person with injury to receive information that they otherwise may not have access to.
What information should be provided? The goals of educating persons with TBI and their caregivers
about sexuality are to help them to understand what is happening if they should experience sexual problems, increase their openness to discuss problems with medical professionals, and give them information on how to address problems. They should be provided with information on what types of sexual problems may occur and on why these problems happen. This information should be provided in lay language, and any written materials should be at a reading level appropriate for the population. If the person with injury and their partners understand why problems are happening, they are less likely to attribute them to personal or relationship issues. While many persons with TBI will not notice sexual difficulties during rehabilitation, receiving education may increase their openness to seek help if they experience problems later. A rehabilitation professional who discusses sexuality in an open, matter-of-fact way, treating it as simply another potential symptom of the injury and indicating that solutions and treatments exist, can be an important role model for persons with injury and their partners. The message conveyed is that sexuality and sexual problems are solvable and shouldn’t be embarrassing. This is a powerful message for clients and their partners. Education on sexuality should include recommendations for appropriate treatments, presentation of alternative ways to obtain sexual satisfaction, and a list of resources where further information can be obtained. The most important recommendation regarding treatment is to receive a comprehensive medical examination, including blood work and urinalysis. This examination can determine any medical causes of sexual problems. The exam may also indicate the need for referral to a specialist, such as an endocrinologist or gynecologist. Medications should be reviewed for potential side effects on sexual functioning. Referrals for individual psychotherapy, couples counseling, and/or marital or sex therapy may also be warranted. Sexual difficulties, even if directly due to the injury, can have a negative impact on relationships. Furthermore, relationship issues can lead to sexual problems, regardless of injury. Therapy is often a first step toward mending relationships and improving sexual functioning. Often, the solution to improving sexual functioning and satisfaction after injury is to alter the way that people have sex. For example, motor or vestibular impairments may make it difficult to have sex in the traditional missionary position. Educating persons with TBI and their partners about alternative positions may be necessary. For persons who do not have a partner and are feeling sexually frustrated, a discussion of masturbation may be warranted. Motor impairments may impact ability to masturbate. Devices to assist with masturbation are available, and clients should be made aware of these resources. Prosthetic devices are also available for males who have difficulty obtaining or maintaining an erection. The use of Viagra or other drugs to improve sexual potency should only be considered under the supervision of a physician familiar with brain injury and any other medications that the client is taking. Females with decreased vaginal lubrication should be educated regarding the use of lubricants. Sexual dissatisfaction after TBI may be due to social isolation and lack of opportunity to form intimate relationships. People with TBI may need to be guided in how to make social connections. Providing education on community organizations (e.g., churches, Y.M.C.A.s, art groups, social organizations) that can be used as a place to meet new people is often necessary. Social
communication impairments often make it difficult for people with TBI to form new relationships, even when they have opportunity. Social skills training, individually or in groups, can be beneficial. For example, a person with TBI may need to relearn how to make appropriate eye contact, how to initiate conversations, how to be a good listener, and how to respect others’ personal space. Finally, no sexuality education program is complete without information on safe sex, including proper use of birth control and protection against sexually transmitted diseases. Persons with TBI are particularly vulnerable because they may have memory, organization, and behavioral control deficits that make it less likely that they will implement safe sex measures accurately and consistently. Helping them to develop a plan (e.g., carrying contraceptives with them at all times) can be beneficial. Cognitive impairments can also make persons with TBI more vulnerable to sexual abuse or exploitation. They should be educated regarding sexual rights (e.g., right to say no to sex at any time; right to express their needs). Sexual rights also include the right to choose their own sexual partner and to make their own decisions about sexual activity- a right that can sometimes be in conflict with the wishes of caregivers.
Conclusion In conclusion, sexual difficulties are common following TBI. They can be a direct result of injury to the brain and related systems, or can result indirectly from physical, cognitive, emotional, and psychosocial residuals of TBI. All aspects of the sexual experience can be affected, including desire, arousal, sexual performance, and ability to achieve orgasm and satisfaction. Sexual dysfunction can have a negative impact on self-esteem, emotional functioning, and relationships. As rehabilitation professionals, educating persons with TBI and their caregivers about sexuality should be part of the holistic treatment approach. Toward this goal, increasing the knowledge of rehabilitation team members regarding the impact of TBI and sexuality is important. Increasing the comfort level of staff in discussing sexuality is equally important. This requires commitment and coordination among the entire treatment team, and support from management. Hopefully, the information in this article can be used to begin this process within your rehabilitation team. References 1.
2. 3. 4. 5. 6. 7. 8. 9. 10. 11.
Rankin TM, Rehabilitation of persons with traumatic brain injury, Appendix A. The consumer perspective on existing models of rehabilitation for traumatic brain injury. NIH Consensus Statement Online. October 26-28;16(1): 1041, 1998. Kreutzer JS, Zasler ND, Psychosexual consequences of traumatic brain injury: methodology and preliminary findings. Brain Injury. 3: 177-186, 1989. Aloni A, Keren O, Cohen M, et al., Incidence of sexual dysfunction in TBI patients during the early post-traumatic in-patient rehabilitation phase. Brain Injury. 13: 89-97, 1999. Hibbard MR, Gordon WA, Flanagan S, et al., Sexual dysfunction after traumatic brain injury. NeuroRehabilitation. 15: 107-120, 2000. Davis DL, Schneider LK, Ramifications of traumatic brain injury for sexuality. Journal of Head Trauma Rehabilitation. 5: 31-37, 1990. Zencius A, Wesolowski MD, Burke WH, et al., Managing hypersexual disorders in braininjured clients. Brain Injury. 4: 175-181, 1990. Garden FH, Bontke CF, Hoffman M, Sexual functioning and marital adjustment after traumatic brain injury. Journal of Head Trauma Rehabilitation. 5: 52-59, 1990. Kreuter M, Dahllof AG, Gudjonsson G, et al., A sexual adjustment and its predictors after traumatic brain injury. Brain Injury. 12: 349-368, 1998. Sabhesan S, Natarajan M, Sexual behavior after head injury in Indian men and women. Archives of Sexual Behavior. 18: 349-356, 1989. Sandel ME, Williams KS, Dellapietra L, Sexual functioning following traumatic brain injury. Brain Injury. 10: 719-728, 1996. Horn LJ, Zasler N, Neuroanatomy and neurophysiology of sexual function. Journal of Head Trauma Rehabilitation. 5: 1-13, 1990. BRAIN INJURY PROFESSIONAL
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16. 17. 18. 19. 20. 21. 22.
Sandel ME, Delmonico R, Kotch MJ, Sexuality, reproduction, and neuroendocrine disorders following TBI. In: Brain Injury Medicine. ND Zasler, DI Katz, & RD Zafonte (Eds.) Demos Medical Publishing, New York, NY. Pages 673-695, 2007. Aloni R, Katz S: Sexual Difficulties After Traumatic Brain Injury and Ways to Deal With It. Springfield, IL: Charles C. Thomas Publisher, Ltd., 2003. Gervasio AH, Griffith ER: Sexuality and sexual dysfunction. In: Rehabilitation of the Adult and Child with Traumatic Brain Injury. 3rd ed. M Rosenthal, ER Griffith, JS Kreutzer, B Pentland (Eds.) F.A. Davis Company, Philadelphia, PA, Pages 479-502, 1999. Marsh NV: Social skills deficits following traumatic brain injury. In: Communication Disorders Following Traumatic Brain Injury. S McDonald, L Togher, C Codse (Eds.) Psychology Press, East Sussex, England. Pages 175-210, 1999. Blackerby WF, A treatment model for sexuality disturbance following brain injury. Journal of Head Trauma Rehabilitation. 5: 73-82, 1990. Kreutzer JS, Seel RT, Gourley E, The prevalence and symptom rates of depression after traumatic brain injury: A comprehensive examination. Brain Injury. 15: 563-576, 2001. Dikmen SS, Bombardier CH, Machamer JE, et al., Natural history of depression in traumatic brain injury. Archives of Physical Medicine & Rehabilitation. 85: 1457-1464, 2004. Lezak MD, Living with the characterologically altered brain injured patient. The Journal of Clinical Psychiatry. 592-598, 1978. Wood RL, Liossi C, Wood L, The impact of head injury neurobehavioral sequelae on personal relationships: Preliminary findings. Brain Injury. 19: 845-851, 2005. Strauss D, Biopsychosocial issues in sexuality with the neurologically impaired patient. Sexuality and Disability. 9: 49-67, 1991. Valentich M, Gripton J, Facilitating the sexual integration of the head-injured person in the community. Sexuality and Disability. 7: 1-2, 1984.
About the Author
Angelle M. Sander, Ph.D. is Associate Professor with tenure in the Department of Physical Medicine and Rehabilitation at Baylor College of Medicine and is Director of TIRR Memorial Hermann’s Brain Injury Research Center. She is the Project Director for the NIDRR-funded Rehabilitation Research and Training Center on Developing Strategies to Foster Community Integration and Participation for Individuals With Traumatic Brain Injury, Co-Investigator for the Texas Traumatic Brain Injury Model System of TIRR, and Principal Investigator for the Model System collaborative project on sexuality after TBI. Dr. Sander also serves as Neuropsychologist at Quentin Mease Community Hospital. She has over 60 published articles, book chapters, and abstracts.
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Disability and Sexual Expression: Debunking the Myths and Working to Break Down Barriers By Anne Ulrich, OTR/L, CBIS and Mary Newton, LMSW, PhD Candidate, CBIS
What is sexual activity?
Many people do not feel comfortable discussing sexual expression. However, it is a frequent concern for people who have sustained brain or spinal cord injuries. Further, many healthcare providers are not comfortable discussing sexuality, and even researchers do not agree on a definition of sexual activity. Some identify it as the act of intercourse with another person; others state that it is any touching of the exposed sexual or other intimate parts of a person for the purpose of gratifying a sexual need. However, the following may be the most complete definition of sexual activity: “sexual intercourse as well as other actions intended to result in sexual arousal or gratification. Sexual activities include penile-vaginal, anal and oral sex. Other actions intended to result in sexual arousal or gratification include, but are not limited to: masturbation, mutual masturbation, fondling, and the use of sex toys (or equipment), and the viewing of pornography” (The Crisis Pregnancy Center, 2007).
Sexuality & Disabilities
There are many erroneous stereotypes about people with disabilities and their ability to express themselves sexually. A common belief is that people in wheelchairs are asexual and don’t have sexual urges or thoughts (Katz, Semesh, & Bizman, 2000). On the contrary, people with disabilities have sexual thoughts, express sexual desire, and are capable of engaging in sexual activity. For example, men with spinal cord injuries (SCI) above T10 level can experience reflex erections, which are the result of direct physical contact with the penis. As the name implies, the erection is reflexive or involuntary and can occur without stimulating thoughts. Women with the same level of injury can 14 BRAIN INJURY PROFESSIONAL
experience vaginal lubrication when the vulva is stimulated. Men with SCI at T10 or below can experience psychogenic erections by using their brain, which is the most potent sexual organ humans possess. Stimulating thoughts result in the brain sending signals down to the sacrum, and then to the penis resulting in an erection. However, despite the ability to achieve erections and therefore satisfy their partner, orgasms and ejaculation may be problematic with certain types of injuries. According to a study by Alexander, Sipski, and Findley (1993), only 38% of individuals with quadriplegia are able to have an orgasm accompanied by ejaculation. If erectile or sexual dysfunction occurs after SCI or TBI, it should be treated like any other aspect of the rehabilitation process. Thus, a multidisciplinary treatment team approach that includes specialty doctors, as well as social workers, occupational therapists, physical therapists, and mental health professionals may provide the best outcomes. Women also experience challenges with achieving sexual satisfaction after injury. Female survivors of TBI’s and SCI’s expressed more negative views regarding their bodies than before their injuries. Specifically, they perceive themselves as less attractive as a result of their injuries (Majiet, 1996). Furthermore, about 48% reported trouble with achieving orgasms after their injuries. Some research specifies an existence of a nerve pathway bypassing the spinal cord and accounting for women with complete spinal cord injuries experiencing orgasm through penetration (Kaufman, Silverberg, & Odette, 2003). Unfortunately, as Kettl et al (1991) point out, female sexuality after injury remains greatly underresearched when compared to that of male sexuality after injury. Certainly physical contact plays a role in sexual arousal in
both men and women; however, one should never minimize the impact of the human brain on sexual functioning. If parts of the body are physically affected by the person’s disability, people are still able to become aroused by sexual thoughts, imagery, or language. Males tend to be more voyeuristic than females. Therefore, what men focus and concentrate on, as well as what they are looking at, is usually important for sexual arousal. Specifically, visual images of sexual acts have been found to stimulate the hypothalamus which in turn produces sexual arousal (Arrow et al., 2002). For this reason, pornography may play a role with male stimulation and facilitation of penile erection. Females tend to be more mood-centered, consequently “setting the scene” can be more important - lighting candles and having romantic conversation, as well as other aspects of state of mind, can have a dramatic impact on sexual arousal in females. It is important to keep in mind that there are individual differences, and many males for whom mood issues are critical as well as females who are stimulated by sexual images. While it has been said that the largest sex organ is the brain, it is not always easy to make major adjustments in one’s sexual persona. Professional counseling can help in working through feelings of fear or anxiety over establishing or continuing a healthy sex life after paralysis or brain injury.
Barriers to Sexual Expression
Sigmund Freud, at the beginning of the last century, stressed the importance of sexuality. His notion was that we are driven by our instinctual sexual energy (libido) that is organized around seeking pleasure and avoiding pain. On the other hand, B. F. Skinner, a behaviorist, explained sexuality as learned behavior based on the rewarding experience of orgasms and intimacy with another individual. It does not matter if one is a follower of Freud (psychoanalysis) or of Skinner (operant conditioning) or any other contemporary school of thought - the overall consensus is that sexuality is a very important part of life that should be viewed as a basic right, and not a privilege. Individuals with TBI and/or SCI not only have to combat pejorative societal attitudes toward disability and sexual activity, but also the many barriers that are brought upon by their injuries. Whether or not one is in a 24 hour supervised facility, or living at home, individuals with TBI and SCI are faced with numerous challenges to sexual expression.
Physical and Physiological Barriers to Sexual Expression Physical impairments are one of the most common challenges of sexual expression for the TBI and SCI population. Some individuals may have balance or mobility issues or require the use of a wheelchair, while others might have limited use of their arms or hands. Whether the issue is fine motor coordination impairment, decreased sensation or incontinence, there are ways around such impairments that enable people with disabilities to have fulfilling sexual experiences. The following are a few examples of compensations for impairments that may limit sexual activity: Fine motor coordination impairment: For those with fine motor coordination deficits, masturbation or the use of assistive sexual devices can be difficult. Fingers and hands may not have the dexterity needed to hold on to a device or reach intimate areas of the body. Thus, modifications to current devices or acquiring new devices that accommodate for poor fine motor control should be explored. Examples of modifications or devices include: • Adaptive switches and built up handles provide users with a larger button to turn devices on or off and to control speed.
• • •
Remote control or partner-operated devices. Stationary or anchored sex / masturbation equipment, which allows the user hands-free operation. Penis pumps are available for people who lack grip strength, or have a difficult time obtaining and sustaining an erection. The penis is placed in a plastic cylinder; as air is pumped out, blood is drawn into the penis, resulting in an erection. In order to maintain a satisfactory erection, an elastic band is then placed around the base of the penis.
Ataxia, Tremors, or Spasticity: For individuals who experience muscle coordination problems, or high or low levels of tone or other disorders of the central nervous system resulting in reduced motor control, the use of hands-free devices such as anchored or stationary equipment may be best to counteract such issues. Equipment can be anchored to a shower chair for easy use in the shower. Penis sheaths, or masturbatory sleeves, allow the user to stimulate the penis even if smooth motor movements are not possible. A person with limited hip mobility and motor control can use a thigh harness to strap a dildo to their leg to allow for stimulation of their partner. Decreased range of motion: If a person does not have full pelvic mobility, pillows or wedges may be helpful for propping in different positions. A sidelying position may also be helpful. If a person does not have full upper extremity range of motion, a vibrator attached to a bendable wand may assist in their ability to participate. Solutions of this nature are easy to find at stores or websites that sell adult materials. Careful evaluation of items for optimal selection may benefit from support through a skilled clinician, sex educator or knowledgeable peer. Decreased sensation: Decreased sensation after injury may be counteracted by experimenting with devices that have stronger vibration, such as the Hitachi Magic Wand. If decreased sensation in one area of the body in particular is problematic, stimulating other areas of the body may result in heightened sensation, developing new erogenous zones for stimulation. For instance, individuals with SCI have an area on their body where sensation begins. That area can be a new erogenous zone and should be explored for sexual response. In addition, experimentation with different kinds of touches, firm messages, or gentler strokes can help individuals with newly acquired injuries to find out what parts of their body respond best to intimate stimulation. Incontinence: Incontinence is a common side effect of a brain or spinal cord injury. Impulses between the brain and the bladder or bowels may not be functioning, thus resulting in the inability to regulate or control these bodily functions. For individuals with incontinence issues, performing a bowel or bladder program before sexual activity can lead to more confidence with partners during sex. A vinyl mattress cover may be indicated. Also, performing the sexual activity in the shower on secure sitting equipment (shower chair) or in other easily cleaned environments may add further peace of mind and allow the person to relax and enjoy the experience. Fatigue & Low Endurance: As the brain and body recovers from injury, fatigue is a common occurrence. Engaging in sexual activity requires endurance. To counteract for lack of endurance, the use of sexual adaptive equipment such as sexual rocking chairs which simulate thrusting, or propping with wedges or pillows can be useful. Focusing on non weight-bearing activities is also useful. Lying on one’s side is gentler on the joints and less taxing. Medications and Effects on Sexuality: Medications are BRAIN INJURY PROFESSIONAL
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often used as part of the recovery process after TBI. Medications can be used for a variety of reasons including pain, depression, seizures, enhancing attention, aggression and more. Many medications have sexual side effects that cause premature ejaculation, erectile dysfunction, anorgasmia, diminished lubrication and reduced sexual drive. These medications may be a crucial part of recovery, therefore, talking to a physician about any sexual side effects you are having can lead to possible solutions to alleviate the side effects. One should never stop taking medications without consulting with their physician.
Environmental Barriers to Sexual Expression:
The Group Home Environment: Individuals with TBI or SCI may require varying levels of supervision and assistance. If this supervision can not be given in the person’s home, a group home may be necessary. Group homes accommodate an average of 4 to 6 individuals. While they may have their own bedrooms, achieving the level of privacy necessary to engage in sexual acts can be difficult. The following are common environmental barriers that are typical in group home living: • • • • •
• •
Supervision requirements (24 hours daily) may necessitate that staff check frequently on the whereabouts or status of the individual. Roommates which impact privacy. Staff attitudes and personal beliefs regarding sex, masturbation, sexual orientation and pornography. Staff may not be comfortable assisting clients with set up before sexual acts or cleaning up after sexual activity. Staff or visitors may enter rooms without notification or enough advanced warning to allow the person in the room time to respond. Staff should be respectful and make sure the individual responds before entering his or her room. Other residents of the home may have problematic responses to sexual activity in the environment. Policies of a facility may themselves limit or affect sexual expression.
Sensitivity Training of Direct Care Staff: A study by King and Newton (2002) found that individuals in residential group homes without any outlets for sexual expression developed aggression and inappropriate, attention-seeking sexual behaviors. This scenario is a clear example of the classic tenet of social psychology which dictates that frustration leads to aggression. The inability to find sexual release can lead to frustration, which can then beget aggression. The group home is an environment where sexuality is not commonly normalized. Rather, it can be perceived as taboo, dangerous, disruptive or risky. Staff, managers, or therapists may view it as inappropriate behavior, versus a normal human response. Such attitudes can lead to the extinguishing of normal, appropriate sexual outlets. This leads people to think of sexual expression in group homes as problematic, so it can be a challenging and difficult topic on which to train direct care staff. For optimal results, training of direct care staff on how to communicate with individuals about sexuality, how to provide nonjudgmental support and the importance of communicating with other treatment team members on this topic is recommended. An untrained staff member can easily make the individual feel guilty and ashamed for having sexual thoughts, or acting out on these thoughts. 16 BRAIN INJURY PROFESSIONAL
Cognitive Barriers:
Common cognitive difficulties after TBI include memory loss, disinhibition, impulsivity, and poor decision making. All of these can become barriers to sexual expression. Memory: Difficulty with memory is one of the most frequent cognitive difficulties experienced following an injury to the brain. This difficulty, if severe enough, can affect the person’s ability to function independently. It can also affect the person’s sexual functioning. One can forget sexual likes of a long term partner, new people they meet, dates that have been arranged, or lose contact information of potential partners, therefore, missing opportunities for relationships. One can also forget to plan for safe sexual activity, thus leading to unsafe sexual acts and possibly to health issues such as the contraction of a sexually transmitted disease. Below are a list of tools and tricks to assist with memory loss: • Effective use of a planner and address book. • Make notes about likes and dislikes (sexual and otherwise) of an intimate partner. • Use alarm watches and pill planners to remember birth control medication. • Carry condoms in your purse or wallet to compensate for spontaneity. • Seek the advice of your treatment team, or care takers for planning dates and special occasions. Executive Skills Impairment and Changes in Emotional Response: Damage to the frontal lobe or the limbic system can cause a variety of disturbances to our executive skills and our emotional responses. Disinhibition, poor problem solving, lability, lack of initiation and a whole host of other executive skills can lead to problems with sexual expression. This can make it difficult to appropriately engage in conversation with potential partners without making unwanted or inappropriate sexual comments or advances leading to rejection and social isolation. In the early stages of TBI recovery, some individuals experience decreased alertness, confusion, and greatly reduced awareness. Behaviors, such as self-exposure and/or self-stimulation, may be present regardless of the environment. It is important to remember that awareness of, and ability to control this behavior, have been affected by the brain injury. Gentle redirection as opposed to scolding or scorning is the appropriate response. In later stages of TBI recovery, additional issues pertaining to sexuality may be observed. Although the person’s level of alertness and responsiveness is generally increased, cognitive difficulties, such as impairments in memory, orientation, insight, and judgment, continue to be common. Responsiveness is sometimes characterized by impulsiveness - acting before thinking through the consequences of behaviors - including the person’s sexual decision making. As a result, normal sexual thoughts and feelings are not censored or inhibited as in a non-injured person. This extends to remarks and actions that reflect sexual thoughts and are inappropriate to the immediate circumstances, such as touching and repeated sexual references.
Conclusion
Sexuality is a vital factor that contributes to the sense of identity each of us develops as a social and emotional being. Expression of sexuality is significantly influenced by self-esteem and selfperception, and by the way we see ourselves in relation to our en-
Resources for Sex Equipment, sex toys, and devices www.comeasyouare.com – run by people with disabilities. This website sells equipment that will aid disabled individuals with self stimulation and partner sex. They also have a bulletin board for discussion groups. www.mypleasure.com – sells all types of equipment including devices for individuals with disabilities and includes product reviewers with professional and disability related backgrounds. www.liberatorshapes.com – company selling equipment and sex toys, including waterproof sheets and washable positioning wedges. www.adamandeve.com – company selling equipment and sex toys. www.womynsware.com – company selling sex toys with product reviews and health/safety information
vironment and other people around us. Changes in appearance, thinking skills, and/or physical changes related to TBI and SCI can alter an individual’s self-perception and result in accompanying changes in the expression of sexual thoughts and impulses. A person is often insecure about the ability to express and experience affection and is concerned about attractiveness and sexual effectiveness. Furthermore, survivors of TBI and SCI face an overabundance of physical, cognitive, and environmental barriers to sexual expression and maintenance of a satisfying sex life. Sexuality is therefore a valid rehabilitation issue for the individual with TBI and SCI that requires support and understanding from the family and treatment team. Open discussions about sexuality and sexual expression are a must between the individual and the treatment team. Direct care staff, group home managers and therapists should be trained in discussing sexuality in a nonjudgmental way, and provide the needed support to help individuals with TBI achieve their optimal sexual functioning. References
Alexander C, Sipski M, Findley T. Sexual activities, desire, and satisfaction in males pre- and postspinal cord injury. Archives of Sexual Behavior. 22(3): 217-228, 1993. Arrow B, Desmond J, Binner L, et al., Brain activation and sexual arousal in healthy heterosexual males. Brain. 125(5): 1014-1023, 2002. Katz S, Shemesh T, Bizman A. Attitudes of university students towards the sexuality of persons with mental retardation and persons with paraplegia. The British Journal of Developmental Disabilities. 46(91): 109-117, 2000. Kettl P, Zarefoss S, Jacoby K, et al., Female sexuality after spinal cord injury. Sexuality and Disability. 9(4): 287-295, 1991. Kaufman M, Silverberg C, Odette F: The Ultimate Guide to Sex and Disability. San Francisco: Cleis Press Inc., 2003. King C, Newton M. Presentation: Sexual Expression and Group Home Living. BIA of Michigan Annual Conference, 2002. Majiet S. Sexuality and disability. Agenda. 28: 77-80, 1996. The Crisis Pregnancy Centers – Glossary of Terms. Acquired on 1/10/2010 from: www.choicesaz. com/resources/glossary/
About the Authors
Anne Ulrich, OTR/L, CBIS is both a Case Manager and Occupational Therapist. She received her Bachelor of Science in occupational therapy from Eastern Michigan University in Ypsilanti, MI in 1995. Anne currently works at the Ann Arbor Semi-Independent Apartment Program with adults who have acquired brain injuries. She has worked at Rainbow Rehabilitation Centers since 2000. Mary Newton, LMSW, PhD candidate, CBIS is both a Case Manager and a Mental Health Specialist. Her experience in the field of brain injury has focused on case management and mental health since 2000. She has conducted research in the areas of sexuality and residential living for adults with brain injury. Mary’s professional experience also includes seven years within the foster care system as a case manager and director. BRAIN INJURY PROFESSIONAL
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Adolescence, Brain Injury, and Sexuality: Promoting Sexual Health
by Barbara Barton, PhD, MSW and Mitchell Tepper, PhD, MPH The normal chaos of adolescence is magnified when the teen is living with a brain injury. Perhaps no other quality of life area is more misunderstood and troubling than sexuality and sexual health. What can be thought of as appropriate experimentation in adolescents without brain injury, can quickly turn into a behavioral management issue for the adolescent faced with the physical, psychological, and emotional effects of a brain injury. There is limited available research on teens with a brain injury and sexuality. From existing studies, however, we know the following: • The length of time since injury can affect how a teen with a brain injury sees him/herself, the level of depression experienced, and their ability to function sexually (Rowland, Lamb & Leahy, 2005). • The more the adolescent with a brain injury is able to participate in life activities that helped define his/her sense of masculinity and femininity, which were a part of his/her lifestyle before the injury—the less disruptive the effects of the brain injury will be on the teen’s gender identity (Gutman & Napier-Klemic, 1996). • If developmental milestones can be achieved consistent with developmental activities that the teen without a brain injury experiences—more satisfactory adjustment will occur (Aloni et al., 1999). • Inappropriate sexual behavior is a problem for a small number of teens. The most common sexual offenses are inappropriate touching, followed by exhibitionism and overt sexual aggression. The most common targets are staff members, followed by members of the general public, other individuals with brain injuries, and family members (Simpson, Blaszczynski & Hodgkinson, 1999). • Returning to work, satisfying leisure activities and sexuality are critically important following a brain injury and need to be addressed in all rehabilitation programming, beginning immediately post-injury (Quintard et al., 2002). 18 BRAIN INJURY PROFESSIONAL
In the absence of evidence-based research, professionals need to rely on what is known about: 1) sexual development in young people without disabilities, 2) what is known about the spectrum of issues faced by adults with brain injury, and 3) expert consensus from those who work in the field of brain injury and sexual health. Sexuality is a biopsychosocial relational and cultural construct. Sexual development includes physiological development, psychological development, social development and development of sexual knowledge. Adolescents must adjust to the physical and hormonal changes associated with puberty. The developments of sexual self-esteem, the ability to manage one’s own emotions, and to empathize with and respond accordingly to others, are all skills teens hone during puberty. Communication skills around relationships, learning social rules and gender identification roles, are also important developments that occur around puberty. In this developmental phase, the learning of sexual information related to sexual function and response, reproduction, contraception, responsible sexual behavior and protection are all critical hallmarks for the emerging young adult. The functional impact of brain injury and sexuality may be negligible, or may have an affect on all aspects of an adolescent’s life. The person with a mild brain injury may likely experience depression and loss of self-confidence due to attention and concentration problems, difficulties with interpersonal communication, and feeling like “damaged goods.” A moderate to severe brain injury can lead to troubling changes in a person’s behavior and personality. A person may be self-centered and unconcerned about the effects of her or his actions upon others. Hyposexuality (low desire) is a commonly seen consequence of TBI. Or, the person with a brain injury may show sexual disinhibition, presenting indiscretions such as masturbating publicly, sexually grabbing at others, or making indiscriminate sexual comments, jokes, or gestures without appreciating the possible negative social consequences of their actions. Impulsive and disinhibited behavior of a sexual nature may be misinterpreted as hypersexu-
Self-pleasuring, or masturbation can often be eventful since the adolescent with a brain injury may be impaired in understanding what is “private” versus “public” behavior. Ostracism from peers is common as usually private activities, such as masturbation, are made public as a function of the effects of the brain injury. Opportunities for privacy, away from parents and caretakers, may be severely limited when brain injury affects physical and/or cognitive functioning to the extent that the adolescent needs to rely on parents or other caregivers for significant assistance with Regardless of the degree or type of brain injury, the psycho- activities of daily living (ADLs) like bowel and bladder care and logical, social, and emotional effects on an adolescent and the dressing. Privacy may also be restricted in the name of physical and psychological safety. Lack of privacy family can be staggering. Puberty is the Adolescence is a time of experimentacan interfere with spontaneous learning initiation of many hormonal and physical changes in the body—all of which tion for any young adult. Just because an about sexuality and limit the opportuniframe a teenager’s identity, sense of self, individual has a brain injury does not mean ties for sexual expression and social conindependence, and worldview. Since the that the risky rites of passage of young tacts. Dating brings yet another cluster of effects of a brain injury can influence adulthood have been eliminated. issues. Most adolescents experience joy hormonal regulation and result in physical changes, it is no surprise that major impacts can be observed and anxiety in negotiating potential relationships with others. in how an adolescent with a brain injury interacts socially and Cognitive, physical, and emotional consequences of brain injury often make finding a relationship problematic. Dating can be interpersonally. The degree of influence of a brain injury sometimes varies as naturally seen as somewhat ritualistic: person meets other perto whether the injury was sustained congenitally (at birth), or son, asks other person out for a movie or to a party, chemistry is acquired during a child’s formative years. In the case of con- develops (or not), which frequently leads to the establishment genital brain injuries, the individual may grow up experiencing (or not) of a physical relationship. Individuals with brain injufrequent proddings and pokings by various medical profession- ries are frequently challenged with sequencing tasks and underals. Human touch has objectified the child’s body, and it is not standing the “big picture” and how behavior X leads to behavior uncommon for children born with brain injuries to be unable to Y (loss of abstract reasoning). Reading the subtext and nonverdistinguish “good touch” from “bad touch.” They have experi- bal language of others’ messages are often missed or distorted in enced their bodies as something to be evaluated, not as vessels of individuals with brain injuries. Any physical anomalies, such interpersonal connectedness. When adolescence arrives accom- as an abnormal gait, bladder issues, or genital issues like erecpanied by a brain injury that has occurred very early in life, the tile problems or vaginismus (painful intercourse) make dating natural boundary that normally exists to separate self from others a challenge. The noise and distraction of public settings and parties can be overwhelming, which can lead to a whole array of is frequently blurred. Some of the natural evolutionary challenges of hormonally- “unaccepted” social behaviors such as promiscuity, withdrawal, charged teenagers, such as impaired problem solving and judg- verbal excessiveness, disorganization, and impulsivity. Sexual health issues for adolescents with brain injuries should ment, loss of reasoning, and memory and attention difficulties, are challenges for any adolescent and their parents. A brain be negotiated carefully. Concrete and very specific education injury may magnify these problems ten-fold. Add to this list needs to occur. For example, one of this article’s authors atuncontrollable mood swings (lability), the lack of appropri- tempted to use a banana to demonstrate condom application— ately reading the social messages communicated by others, and only to find that a banana was carried to every social situation by disinhibited thoughts, actions, or verbal expressions which fre- the adolescent with a brain injury. When asked why the banana quently characterize brain injury, and the adolescent becomes was the social companion of choice, the adolescent replied in a difficult to manage. During a time when acceptance by peers huff that “… you told me it was for sex.” Lesson learned. Body and others is paramount, the degree to which the teenager with parts should be concretely clarified and lessons on intercourse a brain injury experiences themselves as very “different” from and other sex acts should be structured, concise, and leave no peers impacts self-esteem, body image, and performance in so- room for interpretation. After all, a penis is a penis. No matter how gingerly a parent may want to skirt around the issue of cial situations. Adolescence is a time of experimentation for any young adult. intercourse, a penis is not a banana. Sexuality education should promote sexual health. Sexual Just because an individual has a brain injury does not mean that the risky rites of passage of young adulthood have been eliminat- health is more than the absence of disease. Sexual health ined. Indeed, the problems that arise as an adolescent with a brain cludes feeling good about yourself as a lovable and capable sexual injury tries to blend in with a peer group, negotiate sexual rela- being. Thus sexuality education should help adolescents with tionships, and communicate with others range from profound a brain injury to develop competencies and identity formuladepression for the teenager, to isolation, to hyper- (too much) tion. These goals can be achieved through the provision of sexuor hypo- (too little) sexual expression. This is an especially con- ality information, teaching basic interactive or communication fusing time for the adolescent with a brain injury because, de- skills, and the modeling of positive and affirming messages about pending on their degree of insight into their own emotions and sexuality. The purpose of sexuality education is to expand the behavior, they can encounter being shunned by others as a result concept of sexuality beyond intercourse so that individuals (1) of their own limited self-regulation of emotions and boundaries. realize that they are sexual regardless of any cognitive or physical ality. Hypersexuality is a more rarely seen condition, usually associated with bilateral temporal lobe lesions. The person with moderate to severe brain injury may make certain characteristic social errors including the following: • public/private errors where the person may act in public in ways that are usually reserved for in private; • stranger/friend errors where the person may act toward a stranger as one would appropriately act toward a friend.
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impairments, or mode of sexual expression; (2) develop language skills so they can discuss sexuality with parents, health providers, and peers; (3) can assess their own attitudes about people with disabilities while dispelling myths about sexuality and disability; and (4) have an opportunity to practice interpersonal communication skills. A collaborative learning model that is experiential, active, student centered, and interdependent is recommended. This model provides a level of stimulation needed by young people with brain injury, many of whom have attention deficits and difficulty learning. A high level of student-student and studentteacher interaction also provides opportunities for students with disabilities to improve their social and communication skills on the subject of sexuality. At the same time, this helps students to develop active listening and feedback skills to negotiate his or her social environment. Which brings us to the topic of where the young adult with a brain injury can meet people... School is a natural social avenue, but workplaces also offer opportunities to expand social relationships. And, for today’s generation, social networking sites (such as Facebook and Twitter) are paramount to providing interaction possibilities. Careful instruction, initial observation of the teen’s skill, and developing patterns (or routines) for introduction and interaction are all important for success and safety. Rejection by a partner is particularly difficult for teenagers, and can be devastatingly confusing for teens with a brain injury. Memory issues and behavioral disregulation can result in extreme emotional responses, on one hand, and hyperactive pursuit of a person, on the other hand. This hyperactive pursuit can have devastating consequences, from rapid rejection to increasing the risk for physical or sexual abuse. This is a particular concern, as in general, the physical and sexual abuse rates for people with disabilities are up to four times the averages found in the non-disabled population. Openness to commonly understood forms of abuse exist, such as exploitation of one kind or another; but other, more insidious abuses can occur. In the absence of good judgment and understanding the broader implication of one’s actions, the adolescent with a brain injury faces even greater danger that seems to increase as the teen attempts to negotiate increased independence from the parents. Depending on the adolescent’s functional abilities, there are attempts to allow the teen to be more independent in self-care, such as grooming and bathing — or to allow a non-parent/ caretaker to assume those roles. Abuse risks can occur at the hand of caretakers as inappropriate touching during wheelchair transfers or bathing, sexual exploitation, even hiding an electric wheelchair’s battery so that the person dependent on the electric wheelchair/scooter is forced to be non-mobile - all frightening examples of some of the documented means of abuse. With that being said, however, it is not to discourage parents from promoting a teen’s desire for independence — just that parents should be cautious when selecting caretakers, and very communicative as the teen ages into more independence. It is equally important to understand the adolescent’s comprehension of the effects of his/her injury and how to communicate when a violation occurs- and what abuse entails. We want to protect our children no matter how old they get. For the parents of an adolescent with a brain injury, conversations about personal boundaries and safety should occur in terms that the adolescent with a brain injury understands, and in frequent and repetitive dialogue with concrete examples. 20 BRAIN INJURY PROFESSIONAL
PEARLS FOR PARENTS • Practice your own self-care. The teenage years are difficult in the best of circumstances. • Learn what to expect in the teenage years; then understand how brain injury can complicate development. • One size does not fit all. One parent’s experience with their teenager with a brain injury may not reflect what you are going through. • Use your resources: educators, staff, nurses, physicians and your treatment team are there to support you. • Be patient with yourself, your teen, your partner. Just when you think you can’t take it anymore… make a phone call to a friend. And, be patient some more. • Be prepared to redefine what “normal” means for your family. Who has the right to define what “normal” means, anyway! • Don’t forget about the siblings. They can feel left out when excess attention is centered on the injured child. Brain injury, adolescence, and sexuality are not three mutually exclusive constructs. Parents and professionals need to be educated about the effects of brain injuries on young adults, and find age appropriate and concrete education and skills training. The promotion of sexual health will ensure that sexuality, as an important quality of life area, is successfully established in teens who want to be ‘just normal teens’ — and vigorously pursue life beyond brain injury.
References
Aloni A, Keren O, Cohen M, et al., Incidence of sexual dysfunction in TBI patients during the early post-traumatic in-patient rehabilitation phase. Brain Injury, 13(2), 89-97, 1999. Gutman SA, Napier-Lemik J. The experience of head injury on the impairment of gender identity and gender role. American Journal of Occupational Therapy. 50(7): 535-544, 1996. Quintard B, Croze P, Mazaux JM, et al., Life satisfaction and psychosocial outcome in severe traumatic brain injuries in Aquitaine. Annals of Readaptive Medicine and Physiology. 45(8): 45665, 2002. Rowland SM, Lam CS, Leahy B. Use of the Beck Depression Inventory-II (BDI-II) with persons with traumatic brain injury: analysis of factorial structure. Brain Injury. 19(2): 77-83, 2005. Simpson G, Blaszczynski A, Hodgkinson A. Sex offending as a psychosocial sequel of traumatic brain injury. Journal of Head Trauma Rehabilitation. 14(6): 567-80, 1999. Simpson, G., Blaszczynski, A. & Hodgkinson, A. (1999). Sex offending as a psychosocial sequel of traumatic brain injury. Journal of Head Trauma Rehabilitation, 14(6), 567-80.
Resource:
Dawson H, Hendy J, Simons M, et al. Sexuality and acquired brain injury in children and adolescents: A guide for health professionals and families. Publisher: New Children’s Hospital, 1999.
About the Authors
Barbara Barton, Ph.D., MSW has been a disability advocate and employed in the rehabilitation field for over 25 years. She presents at many state and national conferences on the topics of sexuality, body image, brain injury, and disability. In addition to her professional roles, she has been living with MS for over 20 years and actively promotes “nothing about me, without me” in service provision to people with disabilities. Dr. Barton is currently an Assistant Professor of Social Work at Western Michigan University: Phone: (260) 387-1097; Email: barbara.barton@wmich.edu Mitchell Tepper, Ph.D. M.P.H. is a nationally recognized sexuality educator, researcher, and advocate dedicated to ending the silence around issues of sexuality and disability and founder of SexualHealth.com. He is currently an Adjunct Research Assistant Professor of Community Health and Preventive Medicine at Morehouse School of Medicine working in The Satcher Health Leadership Institute’s Center of Excellence for Sexual Health and a Principal Investigator at the Atlanta VA Medical Center. Email: mtepper@msm.edu
drug & alcohol treatment for adults with disabilities
Highly-individualized alcohol and drug treatment program characterized by adaptation to learning styles, frequent oneon-one counseling sessions, and slower-pace with frequent repetition. Phone 763.479.3555 www.vinlandcenter.org BRAIN INJURY PROFESSIONAL
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Sexual Disinhibition and Social Skills: Behavioral Interventions for Persons with TBI
by Michael P. Mozzoni, PhD/BCBA-D, Austin Errico, PhD & Tina M. Trudel PhD
Introduction
The issue of sex difficulties following an acquired brain injury (ABI) can be a complex and uncomfortable subject matter for family members and many professionals. As a result, changes in sexual activity following an ABI or traumatic brain injury (TBI) are frequently omitted as an integral part of a person’s rehabilitation plan. This shortfall is unfortunate given the importance of sexual intimacy to the human condition, as well as the viable options available that could potentially assist individual survivors and their partners who would like to enjoy a satisfying sexual life. This article examines two techniques that demonstrate relatively easy interventions that foster behavior change in persons demonstrating hypersexuality following TBI. The article focuses on two case studies following treatment intervention. Hypersexuality is a rare but well recognized condition following brain injury. It has been associated with dysfunction of the hypothalamus, the temporal lobes and the frontal lobes. Hypersexual behaviors include explicit verbalizations, exhibitionism, non-consensual touching/groping, high frequency masturbation, arousal to mild sexual content/stimuli, over-selectivity to intimate apparel and obsessive sexual thoughts, to mention but a few of the more salient aspects. Hypersexual behaviors present a danger to the person and others. Non-consensual sexual behaviors are not tolerated within society, often resulting in legal consequences. Persons with a brain injury who grope a passerby may find themselves arrested and charged as a sex offender/ predator often requiring them to register with their local police department, and including their name on the national registry of sex offenders. The Merriam-Webster dictionary defines disinhibition as: a loss or reduction of an inhibition (MWD online). Disinhibition and impulsivity are functionally equivalent. While clinicians use terms like these, law enforcement uses terms like “rape, assault, and sexual predation� (Strauss 2005). Disinhibition syndromes, ranging from mildly inappropriate social behavior to full-blown mania, may result from lesions to specific brain areas. Several studies of persons with closed head injuries, brain tumors, stroke lesions, and focal epilepsy have demonstrated a significant association between disinhibition syndromes and dysfunction of 22 BRAIN INJURY PROFESSIONAL
orbitofrontal and basotemporal cortices of the right hemisphere. The orbitofrontal and basotemporal cortices may selectively inhibit or release motor, instinctive, affective, and intellectual behaviors elaborated in the dorsal cortex. Thus, dysfunction of these areas may result in disinhibited behaviors. (Starkstein & Robinson 1997; Grafman, et.al. 2002; Spinella, 2007). Many of the same cortical and sub-cortical structures mediating inhibition and impulsivity (frontotemporal regions) also mediate social skills, sexual behaviors and recognition of emotion (Neumann et. al. 2007). Wikipedia defines social skills as: skills a social animal uses to interact and communicate with others to assist status in the social structure and other motivations. Social rules and social relations are created, communicated, and changed in verbal and nonverbal ways creating social complexity useful in identifying outsiders and intelligent breeding partners. The process of learning these skills is called socialization (wikipedia.org). Social skills are extremely complex and subtle. The speaker must attend to the listener to glean verbal as well as non-verbal feedback. Unfortunately while there are many social skills training programs, few are effective in transferring competence (knowledge of social rules, roles and routines) and performance (acting in real world social circumstances) outside of the training sessions (Ylvisaker & Feeney, 2001). In fact, Rolls (2000) notes that disinhibition associated with injury to the ventral prefrontal region of the brain interferes with learning from consequences, which is a key component of behavioral interventions. This may explain why as a diagnostic group, people with TBI respond better to antecedent based interventions than other groups. Hornak et al. (1996) found that people with ventral medial frontal lobe damage had poor social behaviors. They suggest that when there is damage to the prefrontal cortex, the person may not only have difficulty identifying emotions in others but they may also have difficulty identifying their own emotions.
Two case studies
Two females who presented symptoms of sexual disinhibition and resided in a residential rehabilitation program were participants in this study. Both displayed high rates of sexually disin-
hibited behaviors such as explicit comments, innuendo, propositions and physical contact to typical erogenous zones and the genital area. Males were the majority of other residents at the post acute treatment facility, and would compete to sit next to or be in their company.
Figure 1
Client 1 Susan was a 40-year-old female. Prior to her brain injury, she lived at home with her husband and teenage daughter. Her injury occurred in a single car rollover accident 3 years prior to her admission. She sustained a closed head injury, was in coma for a month, and had multiple fractures. She presented with limited attention, concentration, memory, problem solving skills and disinhibited social skills. Family reported a sudden change in her behavior, mood and sexual disinhibition. Mother - daughter relations were in ruin, as Susan would proposition her teenage daughter’s male friends, dress provocatively and play loud suggestive music. Her marriage was also in distress as her husband struggled to understand his wife’s disregard for his feelings, as she would proposition men in front of him. He could not “satisfy” her constant demands for sex and she would demean him in front of others.
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Teaching: Proactive Strategies The intervention plan included pre-teaching Anna and Susan to, “think before you speak. Be aware of what you say so you can be in control, not your injury.” They were both provided with feedback on each social interaction with treatment providers, i.e., thinking before they spoke and being in control. They also were instructed to utilize a feedback sheet in order to remember prior interactions, and their feedback sheet was reviewed at least hourly. Teaching: Reactive Strategies When Anna or Susan disclosed private information i.e., “I’m so horny…I’m having my period.... I haven’t had sex since…” or any verbalizations of a sexual nature, the treatment providers responded by telling them to, “think before you speak. Be aware of what you say so you can be in control, not your injury.” Or if they were disclosing too much information treatment providers
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Client 2 Anna was a 19-year-old female. Prior to her injury she lived independently and worked as a waitress. Her injury occurred as a result of a passenger car vs. light pole accident 4 years prior to her admission. She suffered an open skull fracture with brain exposure, multiple facial fractures and subdural hematoma. After her initial rehabilitation, she was cared for by her sister who reported behavior deterioration. Anna could not control herself in public, saying anything to anybody, propositioning males and insulting strangers. Her behavior in the home was demanding, her profane language was being mimicked by her 2 year old niece, she would make dates on-line and strangers would arrive at the home seemingly unexpected. Anna often forgot what she had arranged and would not tell her sister about going out. Police were called on several occasions, to prevent her from getting in the car with these strangers. She had several overnight elopements where she would crawl out the bathroom window and return home the next day. She was proactively protected with a depo dose of contraceptive hormones, although she did contract a sexually transmitted disease (STD), which was successfully treated.
Disinhibited Sexual Behavior
Loud music.
noted, “TMI” (too much information). On a few early occasions when they refused to stop, their audience exited. While feedback reduced their sexually disinhibited behaviors significantly, the frequency still placed them at risk. The treatment team then considered social skills, specifically facial recognition of emotion. Social skills are about showing interest and sensitivity to the listener. Milders (2003) found that people with TBI with impaired ability to identify facial expressions of emotions also had increased social problems. Following a conversation with Dr. Larry Williams, Chair of the Behavior Analysis program at the University of Nevada - Reno, the team decided to try fluency training of facial recognition of emotions. Fluency can be conceptualized as attainment of both accuracy and speed of responding (Wolery, et. al, 1988). As a person learns a skill, fluency is the phenomena that the skill has become automatic, allowing it to be displayed with minimal awareness of its use (Howell & Lorson-Howell, 1990). Fluency building occurs for a skill after the basic skills that precede it have been acquired. Previous research indicates that increased speed of responding correctly leads to improved retention and maintenance of learning, improved attention span or resistance to distraction, and increased capacity for acquiring advanced skills or performing complex tasks (Lindsley, 1992). These qualities are ideal for successfully training persons with ABI (Eastridge & Mozzoni, 2005). However persons with ABI frequently have a significantly slower information processing speed and goals are usually 3050% that of persons without ABI.
Treatment 2: Facial Recognition Training The Recognition of Emotion Protocol involves naming (tacting) of emotions. This training uses 24 different cards (Ekman & Friesen, 1975). Each card shows a face exhibiting one of the following emotions: happy, sad, angry, or surprised. For each group BRAIN INJURY PROFESSIONAL
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Summary
Persons with brain injury who exhibit problematic sexual behaviors are at risk of: being separated from society/family; arrest, or living in isolation; or never being able to form lasting intimate relationships. We are only beginning to understand social skill impairments - our ability to diagnose far outweighs our ability to treat. As Hillary Clinton said in another context, “it takes a 24 BRAIN INJURY PROFESSIONAL
Facial Recognition of Emotions
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of emotions, there were 6 actors, male and female. The cards came in two sizes, 8 X 11in and 3½ X 2¼in. The smaller cards are used in fluency trials involving naming or placing the cards in the correct categories (if the person has expressive communication difficulties). The larger cards were used in naming exercises designed to practice each card in isolation and to develop the ability to take the perspective of others in order to identify their emotions. During the baseline phase, Susan and Anna were given a deck of 48 cards 3½ X 2¼in. where each emotion appeared twice. They were instructed to hold the deck of cards and thumb the top card, hold it up and name the emotion then quickly thumb the next card and go as fast as possible for 1 minute. Three baseline sessions were held before training and error correction began. Susan averaged 15 errors and 8 correct while Anna averaged 3 errors and 9 correct per minute Training consisted of untimed review of the cards where Anna and Susan could go through the deck and study the cards. Then three one-minute fluency trials as noted above were conducted. Each trial was scored in terms of total number of responses, as well as the number of errors. In addition, the specific cards missed were recorded. After scoring, Anna and Susan were given feedback on how they scored and were praised for their effort. Error cards were winnowed out for additional discrimination training. Specific cards were chosen based on errors encountered in the first stage. In addition, these trials focused on only two or three emotions at a time. The larger cards (8 x 11in) of the errors were presented, where Anna and Susan were asked to point out specific facial features (around the eyes, mouth and nose) that are characteristic of that emotion. They were also asked to imitate the facial expression, using a mirror and the card right next to it, and name the emotion. If either were unable to correctly name the emotion the correct name would be given. Anna and Susan were then asked to tell a story about the person on the card involving the correct emotion. “Look at this person, how are they feeling? Why do you think they are feeling that way?” If a story appropriate to the emotion depicted on the card was told, they were praised. If the story told was inappropriate to the emotion, they were again given the correct response to the card. Both participants improved in their ability to quickly identify facial expressions of emotions to the fluency rate of 30 per minute without errors for Susan, and 35 per minute without errors for Anna. At the same time, hypersexualized behaviors fell to near zero levels. While problematic sexual behavior was decreased, sex/rights education was implemented, and safe/successful social behaviors continued to be reinforced. Both Anna and Susan were discharged home and at 6 months follow up, Anna had mended strained relations with her sister and had a regular boy friend. Susan was divorced while in treatment and returned to live with her sister. She was working on re-establishing the relationship with her daughter.
Explicit comments, innuendo, propositions, contact.
Loud music.
village.” The strategies presented above demonstrated promise to address hypersexuality in two individuals following TBI. In addition to the outcomes, the strategies offer promise as a model that a multitude of therapists or paraprofessionals could implement as part of a transdisciplinary rehabilitation plan.
REFERENCES
Eastridge D, Mozzoni MP. Fluency and functional motor skills following brain injury. Behavioral Interventions. 20 (1): 77-89, 2005. Ekman P, Friesen WV: Unmasking the Face. Englewood Cliffs, NJ: Prentice-Hall, 1975. Grafman J, Boller F, Berndt RS, et al: Handbook of Neuropsychology. Philadelphia: Elsevier Health Sciences, 2002 Hornak J, Rolls ET, Wade D, Face and voice expression identification in patients with emotional and behavioural changes following ventral frontal lobe damage. Neuropsychologi. 34: 247–261, 1996. Howell KW, Lorson-Howell KA, What’s the hurry? Fluency in the classroom. Teaching Exceptional Children. 22(3): 20-23, 1990. Lindsley OR, Why aren’t effective teaching tools widely adopted? Journal of Applied Behavioral Analysis. 25(1): 21-26, 1992. Merriam Webster Dictionary online. www.merriam-webster.com Milders M, Fuchs S, Crawford JR, Neuropsychological impairments and changes in emotional and social behaviour following severe traumatic brain injury. Journal of Clinical and Experimental Neuropsychology. 25: 157–172, 2003. Neumann DR, Zupan B, Babbage DR, et al., Overview of impaired facial affect recognition in persons with traumatic brain injury. Brain Injury. 21(8): 807-816, 2007. Rolls ET, The orbitofrontal cortex and reward. Cerebral Cortex. 10(3): 284-294, 2000. Spinella M, The role of prefrontal systems in sexual behavior. International Journal of Neuroscience. 117(3): 369-385, 2007. Starkstein SE, Robinson RG, Mechanisms of disinhibition after brain lesions. Journal of Nervous and Mental Disorders. 185: 108-114, 1997. Strauss D: Sexuality after a Person has a Brain Injury. Wake Forest, NC: Lash & Associates Publishing/Training, Inc., 2005. Wikipedia. www.wikipedia.org/wiki/Social_skills Wolery M, Bailey DB, Sugai GM: Effective Teaching: Principles and Procedures of Applied Behavior Analysis with Exceptional Students. Boston: Allyn and Bacon, 1988. Ylvisaker M, Feeney T, What I really want is a girlfriend: Meaningful social interaction after traumatic brain injury. Brain Injury Source. 5(2): 12-17, 2001.
About the Authors
Michael Mozzoni, PhD is the Director of Behavioral Services and Training for Lakeview NeuroRehabilitation Center in Effingham NH. He is a board certified behavior analyst and certified brain injury specialist clinical trainer who has worked with persons with brain injuries since 1985. He holds a Ph.D. in applied behavior analysis from Florida State University and a M.A. in experimental psychology from Harvard University. He serves as treasurer for both the ACRM Brain injury Interdisciplinary Special Interest Group and AACBIS. Mike is a member of the National Advisory Board for the Sarah Jane Brain Project and serves as a member of the editorial board of Behavioral Interventions. He has numerous publications and presentations in Brain Injury Rehabilitation, Employee Turnover, Behavior Management and Skill Acquisition. Austin Errico, PhD is the Clinical Director of Lakeview Neurorehabilitation Center in Effingham, New Hampshire. He currently serves on the Board of Directors for the Brain Injury Associations of New Hampshire and Maine. He is the co-chair of the Brain Injury Long Term Issues Task Force of the American Congress of Rehabilitation Medicine (ACRM). Dr. Errico has co-authored many articles and has presented in the areas of forensic neuropsychology as well as the neuropsychological aspects of alcoholism, endocrine change, oncology treatments, and the training of neurorehabilitation professionals and paraprofessionals. In addition to duties at Lakeview, Dr. Errico has an independent practice which specializes in the training of professionals and paraprofessionals in the field of neurorehabilitation, as well as the provision of assessment and treatment to individuals with acquired brain injury. Tina M. Trudel, PhD is COO of Lakeview NeuroRehabilitation Centers and Specialty Hospital, a national leader in brain injury rehabilitation, developmental services and neurobehavioral treatment for youth and adults. She is Site Director of the Defense and Veterans Brain Injury Center at Virginia NeuroCare and Assistant Professor of Clinical Psychiatry, University of Virginia School of Medicine. Dr. Trudel was recipient of the Brain Injury Association of America’s 2008 Founder’s Award, serves on the board of directors of NABIS and the Sarah Jane Brain Project and co-chairs the ACRM Long Term Issues Task Force, among other professional roles. A clinical rehabilitation & behavioral neuropsychologist by profession, she has published and presented on neurobehavioral conditions and treatment across the lifespan, from hospital to community settings. BRAIN INJURY PROFESSIONAL
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A Closer Look at Sexual Intimacy after Brain Injury
by Tina M. Trudel, PhD
Human Sexuality is a highly integrated, complex activity with physical, cognitive, behavioral, psychosocial, religious and cultural elements. Many people find that sexuality is most pleasurable and rewarding within the context of a mutually satisfying intimate relationship, often referred to as romantic love. Aside from the biomechanical elements of sexuality, brain injury (BI) also potentially impacts core relationship skills and the ability to engage in the complex, interactive pattern of behaviors associated with forming and maintaining an intimate relationship. These relationships occur in a sociocultural context constantly bombarding us with messages about youth, beauty and sex, as well as the experience of internal drives in contrast with conflicting standards. Thus sexuality can become confusing and conflicted, and lasting intimate relationships harder to maintain. Intimacy comes to us from the Latin intimus, meaning ‘inner’ or ‘inmost’ – our deepest self. Healthy sexual intimacy is experienced by many as one of the greatest physical and emotional pleasures attainable, and has long been viewed as a foundation of our humanness. The mutual joy of falling in love is powerful and uplifting. These positive experiences of sexual intimacy are associated with improved self-esteem, mood and psychological health; spiritual health; and physical health including longevity, fertility, immune function, cardiovascular status, sleep and pain management (Whipple et al., 2007; Tepper, 2000). While other authors in this edition address the research background and physical elements of sexuality after TBI (neurology, fatigue, drive, sensation, pain, emotions, disinhibition, etc.), this brief article addresses intimacy from a clinical perspective, as it relates to the potential sequelae of BI and the prospect of sustained romantic love. Changes in sexual functioning for persons with TBI arise from an interaction among physical, cognitive, emotional, and behavioral changes (Aloni & Katz, 2003). All of these changes impact relationship roles and potentially disrupt the delicate dance of intimate partners. For example, a person with frontal lobe injury may be more apathetic versus initiating sexual contact, may have difficulty recognizing subtle cues from a partner, 26 BRAIN INJURY PROFESSIONAL
may struggle to plan, organize and sequence an intimate activity or may be very self-focused and less able to please a partner. Such changes in a relationship contribute to the higher rate of divorce post-BI, and to the difficulties in re-establishing satisfying intimate engagement in those relationships that endure. Research in the field of disability and sexuality indicates that with acquired disability, the longer one is impaired, the more positive sexual feelings tend to become, although some people struggle with adjustment to disability for their lifetime. Higher divorce rates follow acquired disability in general, not just BI. Couples that form post-injury often report better sex, as their patterns of intimate relations emerge together, rather than attempting to modify an existing pattern of intimacy after an injury (DiGiulio, 2003). Also, salience of sexuality factors differ by gender, where women are noted to have greater concerns about appearance and attractiveness to a partner, whereas men express more concerns about performance and the sex act (Taleporos & McCabe, 2002). There are many definitions of intimacy. The literature often discusses intrapsychic (within the individual) versus interpersonal (between the individuals) characteristics of intimacy, both of which are relevant to successful post-TBI romantic relationships. Intrapsychic elements that foster sexual intimacy include a knowledge of one’s self, self-acceptance, awareness of one’s strengths/weaknesses, being self-respecting in relationships, experiencing and sharing a wide range of emotions, and feeling that one is worthy of choosing to experience pleasure and happiness. A number of these intrapsychic elements are dependent on frontal lobe functioning (such as self-awareness) and psychological health, both of which are commonly affected post-BI. Interpersonal characteristics that foster sexual intimacy include psychological elements of self-esteem, respect, loyalty, trust, openness, commitment and intellectual compatibility, again potentially disrupted after BI. Emotional aspects include the ability to communicate emotions/affection, sharing of mutual empathy and effective listening skills – all of which may be vulnerable to brain injury, particularly when executive functions
are impaired. Operationally, successful intimate relationships involve sharing responsibilities, decision-making, control, role expectations, activities, hobbies, traditions, friends, family and community. Often these operational aspects of intimacy are the most intensely impacted after BI, as relationship dynamics shift and life activities are modified or restricted. Mass and Schwebel (1993) discuss closeness as an inherent part of intimacy and communication as a mechanism that facilitates intimacy through self-disclosure and sharing. They further outline five relational components: commitment (feeling of cohesion and connection), affective intimacy (a deep sense of caring, compassion, and positive regard and expression of such), cognitive intimacy (thinking about and awareness of another, sharing values and goals), physical intimacy (sharing physical encounters ranging from proximity to sexuality), and mutuality (a process of exchange or interdependence). All of these components can be assessed and addressed therapeutically by a skilled clinician. Yet often they are not treated, and loving relationships dissolve before our eyes. When providing interventions addressing sexual intimacy, it is important to remember that disclosing problems of this nature is an enormous first step. Both men and women report high rates of discomfort discussing such issues with professionals. Also, in today’s day and age, other resources may be accessed such as the internet, anonymous helplines, peer support, e-learning, e-commerce, links & contacts and telehealth (Tepper, 2007). Even then, access to these resources may be more difficult after TBI. Regardless of how intervention is selected, success factors for sexual intimacy related therapies are similar to those of psychotherapy in general, including self-selection, a positive disposition to therapy, the ability to state sex problems/concerns and assistance needed, setting realistic objectives, having a positive outlook that therapy will help, and as always, that there is a good client – therapist fit. Interventions for sexual intimacy issues often follow the PLISSIT model - Permission, Limited Information, Specific Suggestions, Intensive Therapy. Medical examination is used to rule out or address physical issues. The work of addressing intimacy then commences through addressing the couples system. It is important to note that sexual issues serve a communicative and behavioral purpose within the dyad. These sexual scripts are impacted by TBI. Sexual problems in and of themselves change a relationship at all levels. Influences on sexual intimacy also include elements of time, place and person, all of which can change for the short or long term following BI. Relationship therapies to enhance sexual intimacy address old and new issues in communication and relation, as well as seeking to rekindle passion between the partners. The ingredients to maintaining erotic energy within a couple are easily remembered as the ‘Four T’s’: time, talk, trust and touch. All four can be addressed through treatment, with structured interventions such as scheduling date nights, re-establishing effective communication through listening and sharing exercises and reinstating contact through massage and other forms of sensation. Relationship therapies are effective when there is an acceptance of change, and commitment to become re-acquainted with one another in a loving context. Often desire and arousal can be increased by creating events that lead to anticipation and gradual rediscovery of each partners flow of DAVOS (Desire, Arousal, Vasocongestion, Orgasm, Satisfaction). Intercourse and orgasm are not the only goal, as sex and intimacy are not the same thing.
Intimacy is the umbrella for sexual expression and the couple’s emotional relationship. A couple can explore various ways of sharing intimacy and sex, including changes of context, pace, touch, timing, style, positions, techniques, etc. In terms of a sexually intimate relationship, one cannot ‘not’ communicate. Every behavior we manifest in the dyad is a form of communication, and the nature of sexual intimacy in the couple both hinges on, and influences, the communication. There are various forms of communication, both verbal and non-verbal. While much has been made of gender differences, other demographics are just as salient including culture, age, education, socioeconomic background, etc. (De Villers, 2007). The art of communication opens the door to intimacy, starting with how we convey attraction (eyes, body, touch, self-presentation, opening lines, flirting); how we build a sexually intimate relationship (self-disclosure, listening, timing, inviting) and our overtly sexually intimate communication. Sexually intimate communication can be discussed as both vertical (those things lovers say to one another throughout the day) and horizontal (those things lovers say to one another in bed). The nature of this communication is highly complex and dyad specific. However, all forms of communication can be addressed and improved upon through explicit exercises with the couple or individual, leading to enhanced sexual intimacy. Interventions for the person with BI and their partner can involve more traditional psychotherapeutic interventions, role playing, behavioral homework assignments, social pragmatics training and customized scripted interventions, all tools to support lasting, satisfying sexually intimate relationships. About the Author
Tina M. Trudel, PhD is COO of Lakeview NeuroRehabilitation Centers and Specialty Hospital, a national leader in brain injury rehabilitation, developmental services and neurobehavioral treatment for youth and adults. She is Site Director of the Defense and Veterans Brain Injury Center at Virginia NeuroCare and Assistant Professor of Clinical Psychiatry, University of Virginia School of Medicine. Dr. Trudel was recipient of the Brain Injury Association of America’s 2008 Founder’s Award, serves on the board of directors of NABIS and the Sarah Jane Brain Project and co-chairs the ACRM Long Term Issues Task Force, among other professional roles. A clinical rehabilitation & behavioral neuropsychologist by profession, she has published and presented on neurobehavioral conditions and treatment across the lifespan, from hospital to community settings and is a frequent lecturer on sexuality post-TBI.
References 1.
2. 3. 4. 5.
6. 7.
8.
Whipple B. Knowles J. Davis J. The health benefits of sexual expression. In: Sexual Health: Psychological Foundations. Vol 1. MS Tepper, A Fuglsang Owens (Eds.). Praeger, Westport, CT, Pages 18-28, 2007. Tepper MS. Sexuality and disability: The missing discourse of pleasure. Sexuality and Disability, 18:283-290, 1990. Aloni R. Katz S: Sexual Difficulties After Traumatic Brain Injury and Ways to Deal With It. Springfield, IL: Charles C. Thomas Publisher, Ltd., 2003. DiGiulio G. Sexuality and people living with physical or developmental disabilities: A review of key issues. Canadian Journal of Human Sexuality, 12:53-68, 2003. Taleporos G. McCabe MP. The impact of sexual esteem, body esteem and sexual satisfaction on psychological well-being in people with physical disability. Sexuality & Disability, 20:177-183, 2002. Mass BF. Schwebel AI. Defining intimacy in romantic relationships. Family Relations, 42:3137, 1993. Tepper MS. Access to pleasure: On-ramp to specific information on disability, illness and changes throughout the life span. In: Sexual Health: State of the Art Treatment and Research. Vol 4. A Fuglsang Owens, M Tepper (Eds.). Praeger, Westport, CT, Pages 313-328, 2007. DeVillers L. Facilitating positive sexual communication. In: Sexual Health: Psychological Foundations. Vol 1. MS Tepper, A Fuglsang Owens (Eds.). Praeger, Westport, CT, Pages 119-154, 2007. BRAIN INJURY PROFESSIONAL
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non-profit news NORTH AMERICAN BRAIN INJURY SOCIETY
NABIS is working with the Alaska Brain Injury Network on a very exciting regional conference in Anchorage, Alaska in July 28-30, which will take place at the Hotel Captain Cook. The Alaska Brain Injury Conference will involve both locally and internationally renowned experts who will highlight the latest developments in identifying, diagnosing, treating and promoting long-term quality of life. This unique conference will devote considerable time reviewing current ABI service and treatment practices in Alaska and how newly developed approaches can be incorporated within the diverse cultures and regions of the state. In another effort to bring professionals together, NABIS is joining with the National Association of State Head Injury Administrators on October 5-8, 2010, at the Minneapolis Hilton Hotel for our combined annual meeting entitled Partnering in the Twin Cities. The joint meeting will feature four separate educational tracks: Clinical/ Medical/Health; Research/Outcome; Brain Injury Lifespan; and Systems/Policy/ Advocacy. In addition, we will be holding a special pre-conference symposia on October 5th entitled Treating the Under Treated which will address issues involving the homeless, prison/offenders, substance abuse/chemical dependency, and co-morbid psychiatric/neurological impairments. The joint meeting will be held concurrently with the 23rd Annual Conference on Legal Issues in Brain Injury, a three-day event specifically for attorneys involved in brain injury litigation. This conference will feature an all-star cast of top trial attorneys and medical experts who will present a broad array of practical information covering the latest literature, diagnostic testing methods, rehabilitation, case management, trial techniques and cutting-edge demonstrative evidence. Visit the NABIS website www. nabis.org for more details!
INTERNATIONAL BRAIN INJURY ASSOCIATION
The International Brain Injury Association’s Eighth World Congress on Brain Injury was held in Washington, DC, March 10-14, 2010. With over 1100 delegates from over 40 countries, the Congress was by far the largest in IBIA’s history. Over 650 scientific abstracts were submitted to the meeting, also a new record. The four-day event was packed with educational presentations, panels and workshops, which provided attendees with a unique range of cutting-edge information spanning from basic science to clinical (coma to community) aspects of brain injury. Establishing itself as the premier event in brain injury, the World Congress was officially endorsed by 20 international and national scientific and advocacy organizations. Congress delegates were honored by the presence of United States Congressman William “Bill” Pascrell (D-NJ), who was presented with an award from IBIA in recognition of his many years of service to the brain injury community. Aside from the excellent scientific content, IBIA organized several social activities and events, the highlight of which was the Gala Dinner and Banquet at Mount Vernon, the home of George and Martha Washington. Plans are already underway for the 2012 World Congress which will take place in Edinburgh, Scotland. Visit www. internationalbrain.org for more details as they become available.
NATIONAL ASSOCIATION OF STATE HEAD INJURY ADMINISTRATORS
The National Association of State Head Injury Administrators (NASHIA) and the North American Brain Injury Society (NABIS) are planning intensively for the joint 2010 conference, October 5-8, 2010, being held at the Hilton in downtown Minneapolis, Minne28 BRAIN INJURY PROFESSIONAL
sota. Partnering in the Twin Cities, NASHIA and NABIS are gearing up for a training collaborative that will bring together clinical perspectives, public policy and state interests. Join public and private program administrators, service providers, clinicians, researchers, and advocates working in the brain injury field at this exciting dually-sponsored event that you won’t want to miss! More details will be coming soon on the NASHIA and NABIS websites! NASHIA is pleased to announce that Lorraine Wargo, RN has been hired as the new Executive Director of our organization. Lorraine comes to NASHIA with over 30 years of extensive experience in the field of brain injury, most recently as Director of the Vermont Division of Disability and Aging Services. Lorraine pioneered the State of Vermont through its development of comprehensive services for individuals with brain injury. A member of NASHIA since 1993, she has held a number of officer positions, including President. It was during her Presidency that NASHIA expanded its role on a national level and was successful in receiving the HRSA Technical Assistance Contract. The NASHIA Public Policy Committee, with Susan Vaughn, Director of Public Policy, and Jean Berube, Governmental Relations, has supported a number of issues and collaborates with numerous disability organizations for crucial program and funding initiatives related to civilians and returning service members with TBI. NASHIA, the Congressional Brain Injury Task Force and other stakeholders are supporting increased funding for FY 2011 for TBI Act Programs. Advocates are requesting $8 million for the HRSA TBI State Grant Program, $4 million for the Protection & Advocacy TBI Grant Program; and $10 million for the Centers for Disease Control and Prevention (CDC) TBI program for data, prevention, education, and compliance with evidence based guidelines for BI management... NASHIA co-sponsored the Congressional Brain Injury Task Force Awareness Day reception held March 17th, in DC which featured an Awareness Fair and Congressional Briefing on Sports Concussion. NASHIA is also a member of the Medicaid Home and Community-Based Medicaid Working Group to promote collaboration with regard to the federal/ state Medicaid waiver programs. Please support NASHIA; contact Lorraine Wargo at awarg@madriver.com. Check our website for new and exciting changes at www.nashia.org.
BRAIN INJURY Association of America
BIAA and its Business & Professional Council (www.braininjurycouncil.org) secured the inclusion of rehabilitation in the Essential Benefits Package prescribed by the newly enacted health reform package. Rehabilitation was not included in the original version of the Senate bill that ultimately became law. BIAA’s relentless advocacy preserved this critical treatment in all individual and small group health insurance plans, effective 2014. The value of this achievement cannot be overstated, but there is still critical regulatory and enforcement work ahead. To that end, a special edition of BIAA’s Brain Injury Source presents evidence for the effectiveness and cost efficiency of rehabilitation. This must-have publication is available from our online bookstore (www.biausa.org), where you’ll also find information on upcoming webinars. March was Brain Injury Awareness Month, and again this year, BIAA secured a full-page pro bono ad in People magazine to disseminate our concussion awareness campaign to 40 million subscribers nationwide. BIAA is grateful to the TBI Litigation Group of the American Association for Justice for its financial support of the campaign. As always, BIAA needs support from the professional community to spread help, hope and healing for people with brain injury. Please consider making a tax-deductible donation, becoming a corporate sponsor or joining the Business & Professional Council.
news you can use FDA Approves Botox to Treat Spasticity in Flexor Muscles of the Elbow, Wrist and Fingers The U.S. Food and Drug Administration today approved Botox (onabotulinumtoxin A) to treat spasticity in the flexor muscles of the elbow, wrist, and fingers in adults. Spasticity is common after stroke, traumatic brain injury, or the progression of multiple sclerosis. “Muscles affected by spasticity have increased stiffness and tightness, which may lead to pain, difficulties with hygiene and other activities of daily living, and may affect how a patient looks,” said Russell Katz, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “In clinical trials, treatment with Botox was found to be beneficial to patients with upper limb spasticity.” Botox works by temporarily blocking the connections between
Restore-Ragland
nerves and muscles, resulting in a temporary paralysis of the spastic muscle. Botox has a Boxed Warning that says the effects of the botulinum toxin may spread from the area of injection to other areas of the body, causing symptoms similar to those of botulism. Those symptoms include swallowing and breathing difficulties that can be life-threatening. The most common adverse reactions reported by patients with upper limb spasticity were nausea, fatigue, bronchitis, muscle weakness, and pain in the arms. Botox has not been shown to be safe and effective treatment for other upper limb muscles, spasticity in the legs, or for treatment of fixed contracture – a condition that affects range of motion. Treatment with Botox is not intended to substitute for physical therapy or other rehabilitative care. Botox is manufactured by Allergan Inc. of Irvine, Calif.
Restore-Roswell
Restore-Lilburn
Restore Neurobehavioral Center is a residential, post acute healthcare organization dedicated exclusively to serving adults with acquired brain injury who also present with moderate to severe behavioral problems. Services range from intensive inpatient neuro-rehabilitation and transitional community re-entry services to long term supported living services. Restore Neurobehavioral Center, located in a suburb north of Atlanta, is the site of our inpatient post acute neuro-rehabilitation program as well as one of our supported living sites. We operate two other community living sites, Restore-Lilburn (GA) and Restore-Ragland (AL).
www.restorehealthgroup.com 800-437-7972 ext 8251 BRAIN INJURY PROFESSIONAL
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legislative round-up Susan L. Vaughn, Editor, Legislative Issues “It ain’t over till it’s over.” -- Yogi Berra Like baseball, Congress often goes into extra innings in order to pass a major piece of legislation and certainly the passage of H.R. 3590, the Patient Protection and Affordable Health Care Act, is an example of that. Signed by President Barrack Obama on March 23rd, the bill took several twists and turns. The House of Representatives passed the Senate version, along with the Reconciliation Act of 2010, known as the “fix it bill”, March 21st. The Senate took up the reconciliation bill after the health care reform bill became law, now Public Law 111-148, and passed the bill with two exceptions pertaining to student loans, which required the bill to return to the House. Then, on March 25th, the House passed the Reconciliation Act again with the Senate amendments, which the President signed on March 30th. Overall, the new law expands health care coverage for 32 million Americans currently without coverage. The law affects individuals with brain injury by 1) eliminating many insurance caps and loopholes; 2) expanding Medicaid eligibility; 3) including rehabilitation as an essential benefit; and (4) enhancing long-term care options. While many of the provisions will take place later, some of the provisions that impact brain injury will occur within the first year. Six months after enactment, new insurance plans, and those group health plans that are grandfathered in, are prohibited from denying coverage to children with pre-existing conditions. After 2014, this provision applies to insurance coverage for all individuals with pre-existing conditions. For those who are uninsured now because of a pre-existing condition, they may have access to affordable insurance through a temporary subsidized high-risk pool, effective 90 days after enactment. The U.S. Department of Health and Human Services (HHS) Secretary Kathleen Sebelius has since issued a letter to governors and independent insurance commissioners asking each state to express its interest in participating in the temporary high risk pool program, since many already administer high risk insurance pools. In accordance with the six month time frame, insurance companies are also prohibited from placing lifetime caps on coverage and from dropping coverage on those who are sick. Also, effective during this time frame, is that adult children will be able to 30 BRAIN INJURY PROFESSIONAL
remain on their parents’ insurance plan until they turn 26. This means that adults with brain injury who would otherwise age out of their parent’s insurance plan can stay on for a few more years. Public Law 111-148 defines essential health benefits for health care plans, and they include rehabilitative and habilitative services and devices; mental health and substance use disorder services, including behavioral health treatment; preventive and wellness services and chronic disease management; pediatric services, including oral and vision care. The new law also extends the exception process to the Medicare therapy caps on physical, occupational and speech language therapies. Of great interest to disability and senior advocates are the new sections that provide assistance with long-term care and supports through the Community Living Assistance Services and Supports (CLASS) Act and the Community First Choice Option provisions. The CLASS Act, which was introduced as a stand alone bill by the late Sen. Edward Kennedy (D-MA), establishes a new voluntary national insurance program financed by payroll deductions to provide benefits to adults who become severely functionally impaired. The Community First Choice Option will give states the choice of providing home and community based services to Medicaid recipients instead of nursing homes. Under the provision, states can qualify to receive more federal matching funds to support community living if they eliminate caps on the number of individuals who can live in the community. Also, the law extends the federal Money Follows the Person program until 2016. HHS is hosting a series of live webchats each Thursday to answer Health Reform questions. These sessions are posted on Healthreform@hhs.gov. The Kaiser Family Foundation has prepared an overview of the implementation timeframe which is available at www.kff.org. While the health care reform bill has consumed much of Congress’ time this year, there is still a great deal to be done with regard to the implementation of the law, as well as other legislation and funding that impact the lives of Americans with brain injury and their families. Advocates are calling for increased funding for the HHS Federal Traumatic Brain Injury (TBI) Act Programs; for the TBI model systems funded by the National Institute on Disability and Rehabilitation Research (NIDRR); and for the Departments of Defense and Veterans Affairs programs serving returning service members with TBI. Influencing public policy takes perseverance and on-going work to keep brain injury issues in front of Congress. This can be done by emailing your representative and senators, or inviting them to visit brain injury programs, or writing an op-ed piece for the newspaper. As the passage of the health care reform bill illustrates, all things are possible. About the Editor:
Susan L. Vaughn of S.L. Vaughn & Associates, consults with states on service delivery and serves as the Director of Public Policy for the National Association of State Head Injury Administrators. Ms. Vaughn retired from the State of Missouri after nearly 30 years, where she served as the first director of the Missouri Head Injury Advisory Council. She founded NASHIA in 1990, and served as its first president.
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Craig Hospital in Denver is
exclusively dedicated to specialty rehabilitation and research for persons with spinal cord injury and traumatic brain injury. Craig is committed to helping rebuild lives following catastrophic injury — and to unsurpassed clinical outcomes, patient and family satisfaction, and financial value for the insurance industry and society. As an international leader in the field, Craig consistently serves more than 1,700 inpatients and outpatients from 47 to 50 states each year. Craig is federally designated by NIDRR as a Model Systems Center for SCI and TBI, and is the NIDRR TBI National Data and Statistical Center. Craig has been ranked in the Top 10 Rehab Hospitals for 20 years — every year since the rankings began in 1990, and is one of only a few Magnet® Recognized rehabilitation hospitals in the U.S. The success of our patients is due to Craig’s focused expertise and resources, remarkable
longevity of staff and physicians, large patient milieu, family services and on-site housing, financial stability and an upbeat culture of contagious caring and compassion. As a non-profit, independent hospital governed by a volunteer board of directors, the Craig “family” is dedicated to delivering the highest quality of rehabilitation treatment available anywhere. Ask anyone who has ever been associated with Craig Hospital and you’ll receive a consistent answer: Craig is a very special place. We look forward to serving you.
Craig Hospital Caring exclusively for patients with spinal cord and brain injuries.
3425 South Clarkson Street | Englewood, Colorado 80113 |
www.craighospital.org
StephenM. M.Smith Smith Stephen Stephen Smith Founder, Brain Injury LawM. Center Founder, Brain Injury Law Center
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Negligence across the United States and the world. If you or aMedical loved one has suffered a head injury and are experiencing difficulties, contact him to learn about your rights.
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