Recognizing Neglect and Abuse -- and What To Do About It

As our national leaders grapple with budget issues, it is inevitable that funds needed to support persons with disabilities will decrease. How do we protect our family members and clients? How do we know if they are being mistreated? What actions and inactions constitute neglect and abuse? What can be done about it? Klaw and Lebovits will attempt to answer these questions, drawing on their own experience and expertise in autism and the law. As our national leaders grapple with crucial budget issues, it is likely that government spending with respect to so-called “entitlement” programs will decrease.  Such prospects are harrowing for individuals with disabilities and their families.  It seems inevitable that government money needed to support persons with Autism Spectrum Disorders (ASD), whether in schools, in homes or in community based housing, will decrease – probably in significant increments.  And such reduction in money comes at a time when studies and census reports confirm that the number of individuals diagnosed with ASD is increasing and that many such individuals live in small-sized community based homes where there is inherently a greater risk of neglect and abuse.

             It is well documented that persons with intellectual disabilities, including those with autism, are uncommonly vulnerable to neglect and abuses, including physical and sexual assaults, in large part because they are unable to speak out and unable, in some instances, to even understand that they are being mistreated. As government funding decreases and caregivers are fewer in number, paid less, and under greater stress, it is likely that incidents of neglect and abuse will increase.  It is therefore necessary to re-examine the types of actions and inactions that constitute neglect and abuse.  Likewise, it is crucial that we explore the signs and indications from individuals with ASD that might indicate any sort of mistreatment, even if they are unable to communicate in traditional ways. Lastly, families and institutions need to discuss the remedies and options that are available when acts of neglect and abuse occur.

             Whether set by statute or more generically defined, the concept of neglect usually refers to the failure of a responsible caregiver to deliver resources, services or treatment to a care dependent person who requires those resources, services or treatment to address his or her basic care needs.  For example, Title 18 Pa. C.S.A. Section 2713 creates criminal penalties for a caretaker who  –

Intentionally, knowingly or recklessly causes bodily injury or serious bodily injury by failing to provide treatment, care, goods or services necessary to preserve the health, safety or welfare of a care-dependent person for whom he is responsible to provide care.   

Most people readily understand such definitions to ensure the delivery of food, water, clothing, shelter or medication.  But the concept of neglect is broader.  It also includes the duty to provide supervision and protection for a care dependent person who is unable to exercise sound judgment and/or unable to safely perform an activity of daily living for himself or herself.  For example, many individuals with impaired judgment and/or impaired physical abilities are at risk of elopement away from a safe environment and into dangerous locations such as a busy roadway.  They must, therefore, be supervised at all times and the failure to do so can constitute neglect. Wherever the need for supervision and assistance is present - in feeding, toileting, bathing and recreational activities - the risk of neglect exists.  (Depending upon the overall physical well being of the care dependent person, neglect can also arise with issues such as fall prevention or pressure ulcers.)

            In contrast, wherever the term is used, abuse is commonly defined to constitute deliberate acts committed by a care giver upon a care dependent person that causes physical and/or emotional harm, such as physical, sexual, verbal and/or emotional assaults, such as in the Pennsylvania Older Adults Protective Services Act.  Acts of abuse can also include the inappropriate use of physical or chemical restraints.  Additionally, isolating a care dependent person by restricting contact with family or placing a care dependent person to remain in a bedroom is a form of abuse.   

            Recognizing obvious neglect or obvious abuse is relatively simply.  Most reasonably observant persons who have regular, consistent interaction with a care dependent person will fairly easily take notice of malnutrition, dehydration, bruises and cuts that are out of the ordinary.  Unfortunately, not all signs of neglect and abuse are clear and obvious.  Moreover, care dependent persons are often unable to communicate their problems and may exhibit a host of maladaptive behaviors (an inherent part of their underlying cognitive problems) which conceal or otherwise make it difficult to identify the expressions of distress in response to abuse or neglect.

            There is no single, simple answer to such a situation.  However, it is possible to identify signs of neglect and abuse.  In general, a change in overall emotional affect, as with anyone, might arise from trauma or distress.  An increase in the frequency or intensity of self-injurious behaviors and/or a change in the time of day when self-injurious behaviors occur can indicate a change in the environment of a care dependent person that has caused him or her distress.  Avoidance of a care giver or housemate can signify conflict.  Likewise, agitation in the presence of a care giver or housemate can signal a problem.

            When neglect or abuse occur, it is obviously imperative to correct the underlying problem itself in a fashion that causes no further trauma.  If not handled properly, the correction can inflict as much harm as the neglect and abuse previously committed. This is particularly true with individuals on the autism spectrum who have, as part of their cluster of symptoms a strong need for sameness. Any change in a person’s environment or routine, even if intended to be protective, can in itself be very distressing.

            It is also essential to make sure that the victim of the neglect or abuse receives assessments and therapy designed to identify and treat any physical or emotional consequences arising from the neglect or abuse.  In addition to the needs of the victim, it is necessary for the facility or institution where the neglect or abuse took place to conduct a thorough, objective investigation of the facts and circumstances which allowed or caused the neglect or abuse to occur.  Once understood, it is necessary for the facility or institution to undertake and implement corrective measures to minimize the risk that such abuse or neglect will occur again, including as appropriate additional training for staff members, development of policies and procedures and perhaps even changes in personnel.  Lastly, there might be some situations when the victims of neglect and abuse need to pursue remedies and compensation through the judicial system.             

Lawer, Lindsay and Mandell, David(October 2009).  Pennsylvania Autism Census Project:  Final Report.  Pennsylvania Department of Public Welfare, Bureau of Autism Services.  (October 2009)

Mehtar, M. and Mukaddes, N. (2011). Posttraumatic Stress Disorder in individuals with diagnosis of Autistic Spectrum Disorders. Research in Autism Spectrum Disorders, 5 (2011), 539-546. 

Mevissen, L and de Jongh, A. (2009)[1]. POST-TRAUMATIC STRESS DISORDER and its treatment in people with intellectual disabilities. A review of the literature. Clinical Psychology Review 30(2010), 308-316.

 Waldman, H. Barry and Perlman, Steven P.  (2004).  Analyzing Pennsylvania Community Residential Facilities for Individuals with Intellectual and Developmental Disabilities.  Pennsylvania Dental Journal (Nov/Dec. 2004), 27 – 29.