In our work at The ALS Association’s National Office and Chapters, we all encounter a variety of situations involving persons with ALS and their families. The goals of this document are to:
- Familiarize staff and volunteers with the terms “vulnerable adult” and “abuse”
- Alert chapters that certain employees may be required to report suspected abuse to their state agency
- Provide guidance on how to make a report of suspected abuse
The term “vulnerable adult” generally refers to an adult who, because of disability, medical condition, communication impairment, or advanced age, has difficulty expressing or acting on his or her own wishes. Abuse generally refers to the misuse of power that can cause physical and/or emotional harm to an individual. Abuse can be of a physical, verbal, sexual or financial nature. Abuse may also take the form of neglect or abandonment.
The definitions of the various types of abuse are: (note: different states have varying definitions)
- Physical abuse: Violence that causes pain or injury.
- Verbal abuse: Communication that is perceived as being exploitive, demeaning, insulting, derogatory or humiliating.
- Sexual abuse: Unwanted sexual touching or behavior without consent.
- Financial abuse: The theft or misuse of a person’s property, money, possessions or benefits.
- Neglect: The failure to provide care or attention to the point where a person’s health or safety is concerned.
Depending on the state in which you are employed, there are certain professional designations that are required by the state to report suspected abuse/neglect. These professionals are called “mandated reporters.” In the state of California, for example, those considered mandated reporters include, but are not limited to, licensed physicians, nurses and social workers, as well as individuals responsible for direct care (activities of daily living), and those who supervise individuals responsible for direct care. These professionals, by nature of their training and licensure, are likely aware of their obligation to report. However, if there is any question about who the mandated reporters are at your chapter, it is recommended that you contact your state’s Adult Protective Services (APS) program for guidance.
For a listing of state APS program contacts, you can go to the National Center on Elder Abuse website at https://ncea.acl.gov/. On this web site, you will find toll-free numbers of state services. Once connected to your state adult protective service, you will be able to file a report of suspected abuse, often times by completing a downloadable application. All information is kept confidential.
In certain states, the law can prosecute a mandated reporter who fails to report suspected abuse. Therefore, it is strongly recommended that each chapter obtain a copy of its state Adult Protective Services statutes and review the reporting responsibilities with their current employees, as well as new employees at the time of hire.
Those who are not considered mandated reporters are nevertheless encouraged to make a report of any suspected abuse or neglect. Because it is not unusual to have questions about whether a particular situation is reportable, you can check with your local APS office to inquire about whom in your state may be available to discuss questionable scenarios. The Patient Services Directors are available to help you deal with these challenging situations.
Your chapter should contact the state APS office in advance to discuss the following questions:
- What constitutes abuse in your state?
- How are victims of abuse categorized and defined in your state?
- Who is required to report suspected abuse in your state?
- Where and how does one report suspected abuse in your state?
Your chapter might also consider the following ways to address this issue:
- Include a section in the chapter’s personnel policy manual that addresses the answers to the above questions
- Include reporting responsibilities in chapter job description
- Inquire with your local ALS Association Certified Center or ALS Clinic about how they have chosen to address the issue in their facility
Whether individuals who make a report of suspected abuse can do so anonymously varies from state procedures in your state. Depending on the circumstances, and your relationship with the person with ALS or their family members, you may decide to inform them of your decision to make a report of suspected abuse or neglect. Regardless, it is important to be prepared for the fact that, while it may be necessary, proceeding with such an intervention will change the dynamic of the situation, and possibly your relationship with the persons involved.
Raising our awareness of the issues of vulnerable adults and abuse, as well as the appropriate reporting protocols, enhances the care and services we provide to the people we serve. If you would like to discuss a matter involving the well-being and safety of a person with ALS and their family members, ways to obtain more information in your state, or any other questions, feel free to contact the Patient Services Department at 800-782-4747 or alsinfo@alsa-national.org.
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