Abuse has become a focus of concern in today's society. Historically, signs and symptoms of abuse in people with developmental disabilities have not been effectively recognized, assessed, or treated. Preconceived ideas, institutionalization, lack of creative communication and technologies, and limited self-determination influence the incidence of abuse. These factors impair health care providers' ability to assess, intervene, and treat these people. Development of a supportive culture, education, professional attitudes, and prevention are the tools health care providers may use in partnership with people receiving their services to effectively respond to circumstances of abuse.
Reports of abuse are prevalent in today's society: Pick up a newspaper. Watch the evening news or an afternoon talk show. People agree that abuse must stop. Are we concerned about abuse for everyone? Historically, individuals labeled developmentally disabled (also known as mentally retarded) have been treated with less concern than most people. Is this because they sometimes behave or communicate differently? Unfortunately, many people have been institutionalized because of these differences. Recent surveys (Baladerian, 1991; Crossmaker, 1991; Enfield, 1992; Sobsey & Doe, 1991) suggest an increased risk of abuse in persons with developmental disabilities, especially if they have been institutionalized. Abuse ranges from overt physical attacks to more insidious forms of intimidation and neglect.
There are various challenges when people with developmental disabilities seek health care or mental health services as a result of abusive experiences. The majority of challenges revolve around communication. Health care providers' preconceived ideas about people with developmental disabilities and what is "normal" behavior may interfere with the assessment, intervention, and treatment process. Determining the cause of behavior changes and presenting symptoms in a person with absent or limited communication skills can be confusing and difficult, but these challenges can be met. It is the varied skills of health care providers that make it possible to assess, intervene, and treat abused persons with developmental disabilities. It is often not actual experiences, but the label of "developmental disability" that causes people who provide services to quiver at the thought of assessment, intervention, or treatment.
One question often asked is "What is the functioning level of people with developmental disabilities?" This is a very difficult question to answer for some people. Most test results are limited by a person's verbal language or, rather, lack of expression of language. For instance, many years ago, people with cerebral palsy were often institutionalized because they were thought to have a mental incapacity. What many such people really struggled with was a physical disability that made their language unclear. It is the limitations of the tests that label people that cause diminished expectations and beliefs about these people. Abilities and disabilities vary from individual to individual, for all people of all ages, and across physical and mental disabilities and diseases. Ryan's story is an example of confused labeling and the result of persistence by caretakers. Ryan's behavior may well have been the result of an abusive experience:
If Ryan had presented for health care services without the careful observations of his caretakers, he might have been treated with more psychotropic medication for self-abusive behavior. It takes thoughtful questioning when information is offered to be aware of what is individually normal and then shaking off preconceived ideas for health care providers to assess, intervene, and treat people with developmental disabilities. A deviation from an individual's normal behavior suggests a problem. For Ryan, the problem was an ear infection.
Settings for Abuse
People with developmental disabilities experience abuse in the same settings as most people - at home, school, and work. Unlike most people, except the elderly and people with mental health problems, they also reside in institutions and group homes. An institution is typically a large building where hundreds of people who have something in common live together. A group home is a smaller building, usually a house, with fewer people. Institutionalization is a dynamic of living in a large facility or group home. People in this kind of setting have little choice or self-determination; a person can be institutionalized anywhere. It can happen in a large building, a community group home, or even in a person's own home.
Institutionalization is an approach whereby one group of people makes decisions for another. Decisions may include when and where a person goes; what is worn; who is visited; what is eaten; and when, how, and by whom health care is received. Parents, teachers, staff, and health care providers hold powerful decision-making responsibilities for the lives of the people they serve, deciding when people receive assessment, intervention and treatment and when they do not. It is the "not" that may contribute to abuse.
Abuse is defined by Baladerian (1991, p. 323) as "non-accidental injury of a person by another or the committing of acts that could result in injury, through acts of commission or omission." Many forms of abuse exist: physical, emotional, psychological, sexual, and financial; acts of negligence; and violation of individual's rights. There have been few data collected and scant literature about the abuse of children and adults with developmental disabilities. In cases of general child abuse, 29% to 70% of children abused have a disability before the abuse occurs (Baladerian, 1991). People with disabilities are perceived to be defenseless and passive, which may lower inhibitions of offenders and thus increase risk of victimization (Sobsey & Doe, 1991). Victims are chosen because they are unlikely to report or resist the event. To compound the risk, institutionalization limits people's ability to make decisions for themselves and exposes people to a large number of caretakers.
Discovery of abuse in people with developmental disabilities, the elderly, children, and people with mental health problems takes a similar path. When people with developmental disabilities report abuse themselves, they are not always believed. Some caretakers devalue the abilities of these people they work with, influencing their acceptance of these reports. Some people with disabilities cannot verbalize their thoughts or feelings completely, confounding the process of discovery. Recognizing signs and symptoms of abuse is complicated when the victim cannot respond verbally to questions. The health care provider must rely on information reported by caretakers and physical evidence. Talk about abuse, injuries of unknown origin, increase in self-abuse, aggressive behaviors toward a specific individual, emotional outbursts when near a particular person, and withdrawal from daily activities or people are some signs of abuse that may be seen singly or in combination. Interpreting these symptoms accurately is a challenge; a number of other events may be attributed to them. The solution is to ask a range of questions to seek a complete picture of contributing factors from as many people as possible. Consider this case of eight young men living in a group home:
Institutionalization experiences are compounded by society's devaluing attitudes, stigmatization, and experiences of maltreatment, all of which lead to greater risk of abuse. Aggressive behaviors, self-abuse, and noncompliance are commonly treated with behavior management plans and psychotropic medications. Frighteningly, these behaviors are often the result of current and past abuse. Plan development and decisions about medications typically occur without the input of the individuals concerned, creating passivity rather than empowering individuals to advocate for themselves. Abuse in the lives of people with developmental disabilities has been well hidden by society (Baladerian, 1991). To add to this problem, caretakers establish a relationship that enhances dependency rather than self-determination, leading to increased vulnerability in people receiving services.
Assessment, Intervention and Treatment Processes
Assessment, intervention, and treatment of abuse are integrated processes. Each begins at the time of discovery. Health care providers can draw on their existing knowledge and experience for obvious cases of abuse, as well as input from people who can reliably communicate. Challenges to health care providers include abused people with slow neurological pathways, existing physical disabilities, and limited communication abilities; the lack of communication technology; and their own limiting perceptions about people with developmental disabilities. Liz's story, of abuse by a caretaker, is used as an example of assessment, intervention, and treatment in action:
At this point, assessment began by the staff. Liz could not say what was happening. She had a history of problem behaviors with no staff person available who knew her well enough to help interpret these changes. She did not have involved family members, friends, or housemates who could help get or give information. Staff from work were able to talk about Liz from their experiences. People with developmental disabilities have varying abilities to communicate; a lack of verbal communication does not equate to a lack of comprehension. Asking Liz about her feelings and thoughts gave her an opportunity to try to communicate in another manner about what was happening.
Impaired neurological pathways slow information processing, but a person can still understand some, if not most information. The assessment process must be slowed to allow for comprehension and response. Enfield (1992) recommends obtaining information from as many sources as possible, and planning several time-limited interviews. Questions should be short and concrete, requiring brief answers. Language used should be familiar to the person and level of development, spoken in a tone of respect. Nonverbal responses are very important and can include facial expressions, posture, body tension, emotional responses (such as crying), tactile defensiveness, activity level, and personal boundaries. Interviewers should also assess for low muscle tone, which decreases intensity in a person's facial expression and body language.
Medical histories and records became a focus for information for Liz. What had happened in the past to cause similar behavior? Who had the most accurate information? When people are institutionalized and change living situations, their records do not always follow them. Histories may be inaccurate, influenced by people's feelings and perceptions at the time of writing. Change in health care providers affects the continuity of information if those providers do not or cannot communicate with each other. Accurate information is a key element in discovering abusive behavior.