No one knows the precise number of people with disabilities who experience violence or abuse each year, but the number of cases per year in the United States is probably well in excess of 2,000,000. This includes most of the estimated 500,000 to 2,000,000 cases of elder abuse, about one-third of the estimated 3,000,000 cases of child abuse, and a large but unknown number of offenses among adults with disabilities in their middle years of life.
The majority of perpetrators of these offenses are paid or family caregivers. Some of these cases fall within a traditional definition of domestic violence, but many others do not. Large numbers of people with disabilities require assistance from a variety of caregivers, and violence or abuse often takes place within these caregiving relationships. It is important to note that the large number of offenses committed by caregivers cannot be interpreted as a blanket condemnation of caregivers as a group. The vast majority of both paid and family caregivers render a valuable service to both society as a whole and to the individuals they serve without perpetrating violence or abuse.
Caregivers may be traditional family members, paid assistants, or volunteers. While violence by natural, adoptive, or foster care family members is included within most definitions of family and domestic violence, violence by other caregivers may or may not be included, depending on the nature of the definition of ‘‘family’’ being used. Older and narrower definitions that require a relationship by blood or legally binding marriage appear to exclude many of these caregiving relationships, but more modern definitions based on potentially enduring, intimate, and interdependent relationships clearly include a broader range of caregiving relationships.
Many people with disabilities are highly dependent on personal care assistants or other care providers. Caregivers and the individuals who receive care from them often develop strong emotional bonds that go beyond physical and financial interdependence. Caregiving relationships often involve a high degree of intimacy. For example, assistance is frequently required for dressing, bathing, or using the toilet and frequently requires close physical contact between the assistant and the individual requiring care. The duration of these relationships is highly variable, but many last for decades and continue after formal employment ends. In many cases, caregivers have their own keys to the homes of their clients, and in a considerable number of cases, members of extended families also enter into a second relationship as paid or volunteer caregivers. Considering all of these factors, no clear line can be drawn between caregiving and family relationships, and it is more meaningful to view caregiving relationships along a continuum from less to more family-like, depending on characteristics of the individual situation.
All infants and young children require care from adults, and many adults require care again later in life when age or the accumulated effects of illness or injury reduce independence. In addition, individuals with significant mental or physical disabilities may require various levels of care from others throughout their lives. Much of the violence commonly categorized as child abuse and elder abuse occurs within the context of these caregiving relationships.
In relatively recent years, there has been a growing recognition of violence against people as another category of maltreatment commonly linked to caregiving relationships. Because disability is increasingly prevalent among people with advancing age and because most elder abuse is perpetrated against people who are vulnerable because of some degree of mental or physical disability, almost all cases of elder abuse also can be categorized as violence against people with disabilities. About 30 percent of all children who experience substantiated child abuse and neglect also have diagnosed disabilities. Some studies have reported that as many as two-thirds of children in the child welfare system or foster care have diagnosed disabilities, and children in foster care experience higher rates of abuse than the general population. While much of the violence against people with disabilities could also be classified as child abuse or elder abuse, many adults with disabilities who are too young to be considered elders also become victims of violence or abuse. While there has been much more scholarly study of child abuse and elder abuse than of violence against people with disabilities, the scholarly consideration of violence against people with disabilities has emerged as an overlapping field of study that provides its own unique framework extending across all age groupings.
While foster care is primarily a system of care for children, many adults with developmental disabilities who require care or supervision are also placed in foster homes. The adult foster care system places adults in existing homes and families rather than large institutions or group homes. The creation of foster families for adults with disabilities has generally been an important step toward improving their quality of life, but like other kinds of families, foster families of adults with disabilities may also be dysfunctional, abusive, and violent.
Adding to the large number of people with disabilities in foster homes or who have home-care aides spending time in their homes, there is an entire spectrum of living alternatives that have been generated for people who require care ranging from family-like to institutional. As a result, it is difficult and perhaps inherently arbitrary to draw a clear line between family and institutional living. Assisted living facilities, subsidized adoption, intentional communities, small and stable group home placements, and a variety of other living arrangements have some characteristics of family living and some characteristics of institutional care. For example, some large corporations create a network of small homes that care for one, two, or three individuals with disabilities in what is intended to be a family-like environment.
A wide variety of other individuals may interact with people with disabilities in roles characterized by care, supervision, and significant intimacy. For example, paratransit bus drivers often interact with riders in ways that involve considerable caregiving. They often serve the same riders day after day. They frequently assist their riders in and out of their homes and in some cases go into their homes with them. They commonly come in close contact with their riders as they secure their wheelchairs and fasten their seatbelts. They are sometimes expected to supervise and protect their riders. As a result, these individuals are placed in the role of caregiver as well as driver.
According to the Department of Labor Statistics, 625,770 people employed as home care aides provided services for individuals of all ages who required personal-care assistance in 2002. Furthermore, home health care is the most rapidly expanding segment of the health care industry. This number does not include skilled professionals such as nurses and therapists who provide additional home-care services for individuals who require procedures such as respiratory therapy. As a result, millions of American families have health providers in their homes anywhere from one to forty hours per week, and a few have home-care aides who live with them on a full-time basis. In some cases, families recruit and hire their own assistants, but most home-care aides work for large corporations that provide services under contract. While large companies have a number of advantages, such as the ability to arrange for substitute caregivers if the primary home-care aide is unable to work, they often have the major disadvantage from the families’ perspective of giving families little control over who enters their home.
One high-profile and tragic case illustrating this problem occurred when John W. Ward, a thirty-two-year-old man with cerebral palsy, and his grandmother were both stabbed to death by a home-care worker sent to his home by Trusted Health, Inc. in 1991. The hiring agency had failed to conduct a background check on the health care aide they hired to care for vulnerable people, and after the aide was apprehended for this murder, his six previous felony convictions were revealed to the family. In their defense against a negligence suit that followed the deaths, Trusted Health argued that there was no industry standard on conducting background checks. A Massachusetts jury, however, awarded $26.5 million to the estate of John Ward (Ward v. Trusted Health, 1991, Suffolk Superior Court, No. 94-4297). While this decision sent a clear message to service providers regarding their responsibility to screen home-care workers, relevant court decisions have been mixed, and some courts have ruled that prohibiting people formerly convicted of violent crimes from caregiving occupations is an unconstitutional denial of the right to work.
While many caregiving relationships are healthy and beneficial to all parties, violence, exploitation, and abuse are also common. In many cases, abuse by caregivers is similar to other forms of domestic violence. Physical, emotional, and sexual violence are common. In addition to these types of violence, some caregivers subject people with disabilities to what has been termed ‘‘disability-related abuse.’’ For example, rearranging the furniture to make it difficult for a person who is visually impaired to navigate in his own home or moving a wheelchair so that a person with impaired mobility has to drag herself across the floor can be disruptive, dangerous, and humiliating. Even a brief hesitation or delay in restoring function to the respirator of an individual whose breathing depends on assistance can communicate a powerful death threat. Abusive caregivers may also withhold medication from people with disabilities or overmedicate them as forms of abuse.
Caregiving often involves and sometimes requires exercising some degree of control over the person in care. For example, many people with cognitive or emotional disabilities may need supervision in order to protect them in certain situations. Many caregivers, however, have difficulty limiting their controlling behavior to situations in which it is actually required. Even when the person receiving care is cognitively intact and emotionally healthy, physical disabilities may make the individual so dependent on the caregiver that extreme power imbalances exist. For some abusive caregivers, this control becomes a means to an end, such as financial gain or reduced work demands. For example, a caregiver may be employed to help a person with a physical disability bathe, and the caregiver may use physical or sexual violence, psychological abuse, or rough handling to ensure that the individual will not want to be bathed. Then the caregiver can sleep or watch television rather than working. Similarly, the caregiver may coerce the person in care to hand over his or her bank card and personal identification number in order to get cash or make purchases on a bank account.
In other cases, excessive control becomes an end in itself, and the caregiver gains psychological gratification through the total domination of the person receiving care. Caregivers addicted to controlling others may do a very good job or very poor job of meeting their clients’ physical needs. They may resort to physical violence, but implicit or explicit threats often replace physical violence once domination is established. These abusive caregivers may even see their own use of physical violence as a sign of their failure to establish total control. Many abusive caregivers have difficulty coping with authority figures and suffer from pathologically low self-esteem. They seek out vulnerable people as a way of regaining a sense of control and raising their self-esteem through their demonstration of authority over them.
In some cases, the caregivers who exercise this kind of extreme and unhealthy control have been or currently are victims of domestic violence themselves. They have been dominated and controlled by a violent spouse or parent and feel that they have little control over their own lives. By employing their own violence to establish domination over a vulnerable person in their care, they redirect their displaced anger toward vulnerable victims and gain a feeling of being in greater control of their own lives through their demonstration of control over a more vulnerable person. The redirection of displaced anger may also play a role when caregivers, angry with the agency that employs them but afraid to confront their more powerful supervisors, channel their anger toward the people in their care.
Substance abuse problems also play a role in disinhibiting violence or sexual aggression among some caregivers. Some individuals who are successful in managing their own antisocial impulses under normal conditions lose impulse control under the influence of alcohol or other drugs.
In addition, some people with disabilities exhibit aggression or other behavior that is difficult for caregivers to manage, and there may be times when caregivers must use physical force or restraint to protect themselves, the individual with a disability, or a third party. A legitimate need to use physical force or restraint does not justify the use of excessive force or violence. In some caregivers, the need to exercise occasional control in the interest of the individual with a disability becomes a stimulus or excuse for violence.
Abusive caregivers are sometimes categorized as corrupt or predatory. Corrupt caregivers do not enter a caregiving relationship with the intention of being abusive. They often assume the role of caregiver with a genuine desire to help others or simply as an opportunity for employment. Once in the position of caregiver, however, they succumb to temptation and other pressures. Many caregivers are surprised to find themselves experiencing sexual attraction to their clients or impulses to hurt their clients. These feelings, however, are so common among caregivers that they must be considered as normal, and the distinction between healthy caregiving and abusive caregiving is probably more a function of the individual’s ability to manage these feelings than it is related to the presence or absence of these feelings. Clear codes of conduct, training, availability of counseling for caregivers, good supervision, and a number of other factors can reduce the risk of violence against people with disabilities by this group of offenders.
In sharp contrast to these corrupt offenders, predatory caregivers seek out caregiving relationships and employment in order to access vulnerable people as victims. Their violence is more planned and organized. When their abusive behavior is identified by one employer, they often simply move to another agency that provides caregiving services. This pattern of behavior is sometimes facilitated by agencies that are willing to write letters of recommendation for staff they suspect of abuse in order to rid their own agency of a problem. Training, counseling, and clear codes of conduct appear to have little effect on the potential for abuse among these offenders. It is often difficult to prove the abuse committed by these individuals because they choose their victims carefully, are often adept at covering their tracks, and frequently make an excellent impression on employers and other authority figures.
Some people with disabilities lack the communication skills to complain about their treatment, and some who have intellectual or psychiatric disabilities are unaware that they have a right to better treatment. Many who know they are being abused and who are capable of complaining are fearful to do so for a variety of reasons. Some fear personal retribution from the abusive caregiver. Some fear service disruption or service denial by the agencies that serve them if they complain about services. Others are afraid that a new caregiver may be worse than the one they have, or simply feel too humiliated to tell about their victimization.
The delivery of home health care and support services has become a major industry in many parts of the world. For example, in the United States in 2004, about 7,800 companies were approved by Medicare to provide home health care services. During that year, Medicaid payments for home nursing reached $11.6 billion. This represents only a fraction of the entire industry, because it does not include care provided through other programs or private hiring. Industry standards for the protection of clients from abuse by caregivers remain poorly defined, but generally agencies are expected to take reasonable measures to manage foreseeable risks.
While there has been relatively little systematic study of abuse of people with disabilities by caregivers outside institutional settings, a few studies have attempted to address this issue. Ulicny and colleagues surveyed individuals with disabilities who required attendant care. They found that approximately 40 percent had experienced some form of abuse or exploitation, including 10 percent who had experienced physical violence by paid caregivers. Another study, by Mathias and Benjamin, included interviews of 271 Californians with disabilities who were receiving caregiving service from paid workers who were not family members. They also interviewed 240 clients who received care from paid family members and who reported significantly less maltreatment. Within the previous twelve months, 12.7 percent of those receiving care from non–family members reported being neglected compared to 5.5 percent of those receiving care from family members. In the same period 9.6 percent of those receiving care from non–family members reported their caregivers yelling at them, compared with 5.6 percent of those receiving care from family members.
In addition, among those receiving care from non– family members, 7.2 percent believed that their caregivers had taken money or other items belonging to the client, 5.7 percent had been injured by a caregiver, 3.6 percent had been threatened, and 3.4 percent had experienced unwanted sexual advances from their caregivers. Among those receiving care from paid family members, the rates were 0.8 percent, 4.3 percent, 2.1 percent, and 1.3 percent, respectively. While this and other research suggests that paid family caregivers provide a safer alternative than caregivers who are not members of the traditional family, some government programs disqualify family members from being paid as caregivers. Violence by paid caregivers affects people with disabilities at every stage of life, but because disabilities affect a larger percentage of the population as age increases and because elderly people are less likely to have unpaid family caregivers, it is a particularly common problem among older adults.
Industry standards, selective hiring, and police checks appear to be useful strategies for reducing violence by paid caregivers. Staff training, supervision, and counseling for paid caregivers also appear to be useful in reducing risk. However, chronic staff shortages and high staff turnover make it difficult to maintain employment standards.
Patterns of Caregiver Abuse
Violence by caregivers can be physical, sexual, or psychological. Some extreme forms of neglect should probably be viewed as violence when they are used as threat or intimidation or when they are intended to harm. As a result of the very high levels of dependency experienced by some people with disabilities, some behavior can produce substantially different results. The following discussion provides a few examples of patterns of abusive behavior that are uniquely related to disability and caregiving.
Many people with disabilities depend on caregivers to administer or assist with their medications. Caregivers may deny or delay medication or may provide less than the appropriate doses. Sometimes, this occurs because an addicted caregiver is taking the medication for personal use or a caregiver is stealing the medication to sell or give to an associate. In other cases, this occurs to create distress or anxiety in the person with the disability or even to create a crisis and stir up some excitement. Munchausen syndrome by proxy, a psychological disorder in which caregivers simulate or create illnesses or injuries, may explain some of these cases. Denying medication to an epileptic or diabetic person may result in the individual sleeping excessively and therefore being easier to manage; it may also result in serious harm or even death. Similarly, caregivers may overdose their clients on medications in order to make them more manageable.
Caregiver violence against people with disabilities appears to have a unique relationship to spousal violence. All family relationships involve some degree of caregiving, but the presence or emergence of a disability may radically alter caregiving needs and the balance of power within families. These changes are sometimes accompanied by the initiation of violence or substantial changes in a previously abusive relationship. For example, in many families, one person, most frequently a woman, carries out the primary caregiving role, but the ability to provide care for others or for herself may be compromised by acquired disability. As a result, the former caregiving roles may reverse, requiring significant adjustment by all family members. In some cases, the spouse who is forced to assume more responsibility as a caregiver may resent or have difficulty filling this new role and respond with abuse or violence.
In other families, an abusive and violent relationship results in the domination of one spouse by another, usually the domination of the wife by the husband. However, husbands are often older than wives and frequently acquire disability as a result of injuries or disease at earlier ages. As a result, a violent and domineering spouse may become vulnerable and dependent on his or her former victim. In some relationships, this can lead to a role reversal, and the former victim becomes the abuser.
Another related from of violence may occur when caregivers allow or encourage one individual with a disability to act violently against another. This may occur as a result of simple neglect or a variety of other motives, such as reducing one’s own demands as a caregiver by reassigning one’s duties to a more able resident. For example, in a classic case, a small care home took in just two clients, a vulnerable sixteen-year-old girl with developmental disabilities and a violent twenty-year-old sex offender with a behavioral disorder. Because she lacked the necessary skills to leave the group home without supervision and the staff was unwilling or unable to take her swimming, they entrusted the vulnerable sixteen-year-old to the sex offender, with the tragic and predictable result of murder.
People with disabilities rely heavily on a variety of family and nonfamily caregivers. While most caregiving relationships are healthy and beneficial, they frequently provide a context for abuse. Patterns of abuse within caregiving relationships are variable. Careful screening and training of people who work as caregivers of vulnerable people help to reduce the risk of violence by caregivers.
- Anetzberger, G. J., B. R. Palmisano, M. Sanders, D. Bass, C. Dayton, S. Eckert, et al. ‘‘A Model Intervention for Elder Abuse and Dementia.’’ Gerontologist 40, no. 4 (2000): 492–497.
- Awadallah, N., A. Vaughan, K. Franco, F. Munir, N. Sharaby, and J. Goldfarb. ‘‘Munchausen by Proxy: A Case, Chart Series, and Literature Review of Older Victims.’’ Child Abuse and Neglect 29, no. 8 (2005): 931–941.
- Benedict, M. I., S. Zuravin, M. Somerfield, and D. Brandt. ‘‘The Reported Health and Functioning of Children Maltreated While in Family Foster Care.’’ Child Abuse and Neglect 20, no. 7 (1996): 561–571.
- Finkel, P., M. Fishwick, K. L. Nessel, and D. Solz. ‘‘Sexuality and Attendant Care: A Panel Discussion.’’ In Sexuality and Physical Disability: Personal Perspectives, edited by D. G. Bullard and S. E. Knight. St. Louis: C. V. Mosby, 1981, pp. 111–123.
- Fisher, J. W., and C. B. Dyer. ‘‘The Hidden Health Menace of Elder Abuse: Physicians Can Help Patients Surmount Intimate Partner Violence.’’ Postgraduate Medicine 113, no. 4 (2003): 21–24, 30.
- Hansberry, M. R., E. Chen, and M. J. Gorbien. ‘‘Dementia and Elder Abuse.’’ Clinics in Geriatric Medicine 21, no. 2 (2005): 315–332.
- Harden, B. J. ‘‘Safety and Stability for Foster Children: A Developmental Perspective.’’ Future of Children 14, no. 1 (2004): 30–47.
- Hazen, A. L., C. D. Connelly, K. J. Kelleher, R. P. Barth, and J. A. Landsverk. ‘‘Female Caregivers’ Experiences with Intimate Partner Violence and Behavior Problems in Children Investigated as Victims of Maltreatment.’’ Pediatrics 117, no. 1 (2006): 99–109.
- Matthias, R. E., and A. E. Benjamin. ‘‘Abuse and Neglect of Clients in Agency-Based and Consumer-Directed Home Care.’’ Health and Social Work 28, no. 3 (2003): 174–184.
- McFarlane, J., R. B. Hughes, M. A. Nosek, J. Y. Groff, N. Swedlend, and P. Dolan Mullen. ‘‘Abuse Assessment Screen-Disability (AAS-D): Measuring Frequency, Type, and Perpetrator of Abuse toward Women with Physical Disabilities.’’ Journal of Women’s Health and Gender Based Medicine, 10, no. 9 (2001): 861–866.
- Milberger, S., N. Israel, B. LeRoy, A. Martin, L. Potter, and P. Patchak-Schuster. ‘‘Violence against Women with Physical Disabilities.’’ Violence and Victims 18, no. 5 (2003): 581–591.
- Nosek, Margaret A. ‘‘Sexual Abuse of Women with Physical Disabilities.’’ In Women with Physical Disabilities: Achieving and Maintaining Health and Well-being, edited by D. M. Krotoski, M.A. Nosek, and M.A. Turk. Baltimore: Paul H. Brookes, 1996, pp. 153–173.
- Smith, J. M. ‘‘Foster Care Children with Disabilities.’’ Journal of Health and Social Policy 16, no. 1–2 (2002): 81–92.
- Sobsey, D. Violence and Abuse in the Lives of People with Disabilities: The End of Silent Acceptance. Baltimore: Paul H. Brookes, 1994.
- Sullivan, P. M., and J. F. Knutson. ‘‘Maltreatment and Disabilities: A Population-Based Epidemiological Study.’’ Child Abuse and Neglect 24, no. 10 (2000): 1257–1273.
- Ulicny, G. R., G. W. White, B. Brandford, and R. M. Mathews. ‘‘Consumer Exploitation by Attendants: How Often Does It Happen and Can Anything Be Done About It?’’ Rehabilitation Counseling Bulletin 33, no. 3 (1990): 240–246.
- Yativ, N. ‘‘Nanny, Lies, and Videotape: Child Abuse and Privacy Rights Dilemmas.’’ Pediatrics 115, no. 6 (2005): 1791–1792.
- Young, M. E., M. A. Nosek, C. Howland, G. Chanpong, and D. H. Rintala. ‘‘Prevalence of Abuse of Women with Physical Disabilities.’’ Archives of Physical Medicine and Rehabilitation 78, no. 12 (1997): S34–S38.