Back to Liz's story:

At the time of Liz's behavior change, the staff reported they were concerned about interactions between Liz and Ralph, a staff person. At times, Liz was aggressive toward Ralph and would hit him. Approaching him with affection later, she sat on his lap laughing. Within a day of the reported staff concerns, Ralph received training about appropriate interactions with Liz and received instructions regarding the agency's abuse policy. Ralph made excuses for Liz's behavior change, saying she had been "aggressive" in the past. Liz's crying increased.

An important aspect of assessment, intervention, and treatment is recognition. Persons who provide care to individuals must be trained to recognize signs and symptoms of abuse. If the cause of changes in a person's behavior is not viewed within the context of the environment, an inaccurate clinical diagnosis may be assigned. People with developmental disabilities may need more time to respond because of impaired information processing. If someone has no means to talk, is feeling afraid, frustrated, angry, or helpless, and is unable to influence others, then it may be necessary for that person to use actions to attract the attention of someone who can help. People may be ignored for "acting out" because they "just want attention." Instead, caretakers should carefully investigate for causes of behavior change. Behavior as a means of communication is often minimized. This could have happened to Liz and probably had in the past.

Sobsey and Doe (1991) recognize a need for independent advocates for people with developmental disabilities. Advocates are important to an individual who does not communicate clearly and whose comprehension level cannot be determined. Advocates are significant contributors in an abuse investigation, especially if they are not affiliated with service providers. Advocates may be family members, friends, staff persons, housemates, fellow employees, employers, consultants, or others, as suggested and agreed upon by the individual. Joyce (1992) states that if a person receiving support requires and/or desires to have someone speak on his or her behalf, because he or she is unable to communicate wishes fully, then one or more advocates could be involved in the process. Advocates should know their person well enough to understand and discuss his or her needs and should convey the individual's desires clearly, even if those desires differ from what the advocate thinks may be best for the person. Having more than one advocate increases understanding of a person's wishes, needs, and problems. Even when advocates are involved, it is important for others who care about a person to try to understand what the individual is communicating, despite the level of verbal proficiency. Involving several people during assessment, intervention, and treatment increases the reliability of information shared and reduces risks to the person if an "advocate" is also an abuser.

What information is obtained from an advocate? Advocates should be asked questions usually asked of any victimized person. If the abused individual is present during the interview, and he or she should be, respect and tact are required in discussing the person and these very sensitive issues. A written description of what has happened and how present behavior compares with normal behavior is very helpful. Data compiled about behavior change and symptoms of abuse observed over time must be requested when caretakers are involved. Assessments completed by consultants, such as nurses, psychologists, social workers, speech therapists, physical therapists, and occupational therapists, provide valuable interdisciplinary team information. Finally, an assessment is based on observations and questions. Even if the victim does not talk and seems to lack comprehension, staff can trust their observations of a person's behavior to communicate feelings and information.

Liz's story continues:

Along with training, Ralph's supervisor observed his job performance carefully. One day later, Ralph was found with Liz in her bedroom. She was upset and crying again. Liz was in a "compromising" position, with clothes disheveled, and Ralph adjusting his trousers. Ralph was removed from the job site. Staff whisked Liz off to the emergency room for a rape examination. The police were notified and began an investigation.

The staff person who accompanied Liz to the emergency room came prepared with information to communicate to the health care providers and police. Liz was not able to speak for herself. Would the health care providers and police be prepared for Liz and her challenges? In fact, they were caring and patient, using the information brought by the staff person. Yet their ability to elicit further information was affected by a lack of knowledge about people with developmental disabilities and their limited options for effectively communicating with Liz.

Assessment began at Liz's home when staff researched past problems through medical records and with documented and recalled observations of Liz and Ralph. Intervention began as soon as they felt concern about Ralph's interactions with Liz. Assessment continued in the hospital, and treatment for physical effects began as well.

To determine the best psychological and emotional treatment, health care providers should consider factors that contribute to symptoms and severity of abuse. The TRIADS checklist developed by Burgess, Hartman, and Kelley (1990) assists in determining severity. The TRIADS checklist evaluated types of abuse, the autonomic response of the individual abused, duration of abuse, and style of abuse. Compiled information is used to develop a plan of support.

Now for the end of Liz's story:

The police completed their investigation, and Ralph could not be prosecuted. There was no physical evidence, and Liz could not verbally describe all that had happened. The staff acted as Liz's advocates and helped stop this abusive situation quickly. Liz received minimal (because of her limited communication) counseling for a while afterwards. Ralph was dismissed from his position.

Reliance on "talking therapies" limits treatment of victims with developmental disabilities. Health care providers need to be educated by family members, advocates, staff, and/or speech therapists in other ways to communicate. Conversation is not the only means to provide and receive information. There are several methods of, and technologies for, communication that may help people with developmental disabilities consider and respond to questions. These methods can be crucial in an alleged abuse investigation. Talking may be supplemented by other types of language. Sign language is a commonly used form of communication. However, too few health care providers are fluent in signing. Drawing pictures can be a valuable tool, but many institutionalized people were never taught to draw. The use of photographs or sketches can help with an individual who uses gestures to communicate. This idea works well when there are predictable questions and answers. Picture boards or books using pictures from magazines, drawings, or photographs also work well. It may take a little extra time to look through the pictures while asking questions, but the results make the method worthwhile.

Facilitated communication (FC) is a newly recognized means of asking and answering questions. FC did not exist when Liz had her experience, but she does use it now. FC involves pointing at letters, words, or pictures with touch resistance of a facilitator. Touch resistance occurs when the person points to a letter, word, or picture, with the facilitator pulling the person's hand away from the communication device, giving time for the person to make their next choice. Some people simply use a piece of cardboard with letters, words, or pictures to communicate a message. Others have hand-held pocket-size keyboards. More sophisticated devices are computerized, with a keyboard, tapes to print messages, and voice output. Bilken (1993) describes FC as physical support that ranges from providing resistance to a person's hand and index finger to periodic taps to the shoulder. Lapos (1993) relates that some people who use FC are becoming independent in typing. Wheeler, Jacobson, Paglieri and Schwartz (1993) note that FC is useful for individuals who have "profound" or "severe" developmental disabilities. They go on to say that research is recent and limited. Further testing and validation are required.

The preceding case displays a variety of challenges. Forms of communication, perceptions of staff and health care providers, interpretations of behavior, and neurological implications are focal points. Individualizing efforts and broadening the scope of observations can resolve many challenges presented in the assessment, intervention, and treatment process.

Prevention As Assessment, Intervention, and Treatment

Prevention is the key element in assessment, intervention, and treatment. Prevention is especially important because 90% of abuse does not result in treatment for individuals (Baladerian, 1991). Baladerian (1991) says that vulnerability to victimization must be addressed in prevention and balance with the opportunity to take some risks. Always protecting people from experiences does not protect them from abuse. Keeping people out of institutions, however, does reduce the risk of abuse. Teaching people merely to comply with therapeutic interventions and requests of caretakers increases the possibility of abuse. Essentially, people are taught to accept things that are helpful - or potentially hurtful. The key is to teach people to balance compliance with assertiveness in following directions and making decisions for themselves. People should be involved in the development of their own therapeutic interventions. Sobsey and Doe (1991) recommend developing a culture that supports victims, eliminates abuse, and supports those people who report alleged abuse. All people should be educated about abuse and what they may do to stop it.

Creating societal, familial, and organizational cultures that support people with developmental disabilities in advocating for themselves minimizes the effects of institutionalization. As long as such people are perceived in a devalued manner, abuse will persevere. Society, families, and service providers have diversified ideas about how people with disabilities learn to live in the world, some more optimistic than others. Developing a culture that focuses on learning and competence and is influenced by respect for diversity will help these people to resist and, when necessary, report abuse.

Creating a culture that encourages diversity begins with a set of humanizing principles and goals, which are the building blocks of support. Barol (1990) describes goals for professionals in working with the person with developmental disabilities. These goals may be applied in all situations, including school, work, family, and health care settings. Professionals are responsible to provide adequate, proper, humane, and individualized care; planned habilitation and treatment; and respectful consideration of personal dignity and integrity of a participant (Barol, 1990). It is necessary to include care that is sensitive to cultural differences in the least restrictive or intrusive manner, is in line with prevailing community standards, and is designed to encourage individual competencies (Barol, 1990). The first step in accomplishing these goals is to believe that individuals with developmental disabilities have the right to understand and to be treated with as much dignity as all other well-respected persons. Change in expectations and attitude contributes to success in prevention of abuse.

Conclusion

Living with a label has dramatic effects on people, especially people who have been or are institutionalized. They are economically deprived, have little credibility, lack opportunity for self-determination, depend on others to meet their needs, have limited access to resources, and are taught to be compliant (Crossmaker, 1991). Keeping people from being institutionalized reduces the risk of abuse. Institutionalization is directly related to being labeled disabled. Consider the word "disability": The prefix "dis" is defined as an "absence of," and the word "disability" is defined as an "incapacity" (Webster, 1988). A seemingly more appropriate prefix to the word "ability" is "dys." Webster (1988) defines "dys" as a difficulty. In persons labeled with developmental disabilities, it is more accurate to define disability as a difficulty with an ability rather than the absence of an ability. When presenting for health care service, such persons have often had labels become the focus of intervention rather than underlying factors or past victimization (Crossmaker, 1991). Labels can be changed.

Consider Jeff's situation:

Jeff was 33-year-old man with developmental disabilities. He often abused himself by pulling his hair. For years, his self-abusive behavior was attributed to chronic anxiety. Jeff did not speak except to repeat other people's words or sing. He had autistic characteristics. A couple of years ago, Jeff tried facilitated communication using a computer. The staff were surprised by the depth of his feelings and observations. At first, he needed a lot of touch resistance, but he gradually became nearly independent in typing, requiring touch to his shoulder only. Over a period of time, Jeff's self-injurious behavior dramatically increased. One day the staff sat with him and asked what was wrong. Jeff said that his back hurt. At first, the doctor diagnosed him with arthritis in his back, possibly because of an injury or blow to the back. Medication was ordered. Jeff persisted in reporting pain using FC. Staff arranged another appointment with his doctor, who ordered further diagnostic tests. Jeff had a kidney dysfunction requiring immediate surgery.

Without Jeff's use of FC, the staff and health care providers could not have made an accurate diagnosis. Anxiety and self-abuse would have continued to be his primary diagnosis until Jeff's medical condition became more serious or even terminal. With his newfound ability to "talk," Jeff became empowered to report accidents, illnesses, and even abuse. He participated in decisions about his care, and the staff and health care providers began to respond to him differently. The difference was that they now recognized his abilities because he could “talk” to them. Jeff had been thinking and feeling all along.

Health care providers have the skills required to assess, intervene, and treat abuse in persons labeled developmentally disabled. Abuse is insidious in its presence in our society. Recognizing signs and symptoms of abuse can influence the discovery of abuse in people with developmental disabilities and allow for quick and germane action. Such people can be taught to "speak" for themselves so they are not dependant on others to interpret their actions. Sometimes referrals are not made for treatment because of a belief that individuals with disabilities do not comprehend their experiences and therefore do not have emotions or thoughts to respond to abuse or other experiences. This is a matter of confusing people with preconceived ideas of health care providers and labels. Underlying cultural beliefs that devalue people are the most difficult to transform, but health care providers do have the capacity to change these beliefs. The ability to treat an abused person with disabilities is limited by perceptions, not skills. As prevention and treatment programs develop, people who receive support services can be empowered to fight abuse through their participation in the development of the programs. Individuals with disabilities must be encouraged to be involved in the development and delivery of the services they receive. These services require attitudes and actions of flexibility, accessibility, and integration.

It is the health care provider who, through his or her own sense of worth, empowers others to take action for themselves. Humanistic principles are the driving force that imparts strength and courage to accomplish these actions. The battle to increase self-determination and decrease victimization is ignited through creative communication, assertiveness skills, increased research, expanded literature, and involvement of advocates. People with a wide range of developmental disabilities who have been abused can, with the knowledge, support, and respect of their health care providers, be successful in the assessment, intervention and treatment process.

Baladerian, N.J. (1991). Sexual abuse of people with developmental disabilities. Sexuality and Disability, 9, 323-335.

Barol, B.I. (1990). Values and ethics for professionals serving persons with mental retardation. Unpublished manuscript.

Bilken, D. (1993, November). Questions and answers about facilitative communication. Facilitated Communication Digest, 2(1), 3.

Burgess, A.W., Hartman, C.R., & Kelley, S.J. (1990). Assessing child abuse: The TRIADS checklist. Journal of Psychosocial Nursing and Mental Health Services, 28(4), 6-14.

Crossmaker, M. (1991). Behind locked doors-Institutional sexual abuse. Sexuality and Disability, 9, 201-218.

Enfield, S.L. (1992). Clinical assessment of psychiatric symptoms in mentally retarded individuals. Australian and New Zealand Journal of Psychiatry, 26, 48-63.

Joyce, S. (1992). Gathering together: A collective approach to personal planning with people who have been labeled. London, Ontario: Realizations.

Lapos, M. (1993, Fall/Winter). The issue is support. Facilitated Communication News, 2.

Sobsey, D., & Doe, T. (1991). Patterns of sexual abuse and assault. Sexuality and Disability, 9, 243-259.

Wheeler, D.L., Jacobson, J.W., Paglieri, R.A., & Schwartz, A.A. (1993). An experimental assessment of facilitated communication. Mental Retardation, 31(1), 49-60.

Webster's II: New Riverside University Dictionary. (1988). Boston: Houghton Mifflin.

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