When faced with a dilemma, it’s important to have a process to help us reach an ethical solution that in the best interests of those affected. ADWA’s Code of Professional Ethics & Conduct includes a brief description of an ethical decision making process within the third principle of Integrity and Decision-Making.
“As a disability professional, I will
- Make decisions by identifying those affected, identifying the issues and circumstances involved, recognizing any personal biases and interest, weighing risks/benefits to the individual I support and others, and making appropriate decisions with the best interests of the people I support in mind.
- Consult with my supervisor and other professionals when I am unsure about a decision, obligation or best practice.”
Here is an ethical dilemma that demonstrates how this works.
You provide support to Jack, a recently retired man. He doesn’t miss working, but he misses talking about sports with his co-workers in the coffee room each day. A co-worker tells you about a group of individuals who meet at the local coffee shop on Monday mornings with their workers that are in the same age range as Jack and several are sports fanatics. You check with one of the workers to make sure Jack would be welcomed and then make sure Jack is interested in trying out the group. At the coffee shop next Monday, Jack joins the guys and you join the other staff at a nearby table. While the staff are actively engaged in conversation, you notice that the individuals at the table with Jack say little once introductions have been made. Jack’s attempts to engage them in sports or other topics of conversation get little response. The other staff seem not to notice that the people they support are disengaged and look bored.
In this situation, an ethical disability worker sees the need to take action, but what is the best course of action to take for everyone involved? Think about what you would consider for each step of the process before clicking on the step to see our answer.
Confidentiality and the "Need to Know"
Although disability service employers typically have new employees, contractors and volunteers sign an oath of confidentiality, people vary in how they interpret it. Some believe that they can share information about people freely within the support team or even within the organization (i.e., with others who have signed the same oath of confidentiality). This interpretation is simplistic and would anger a lot of individuals receiving support who correctly feel those people don’t have a right to know their private affairs. On the other hand, confidentiality rules do not require disability workers to keep everything they hear or see a secret from everyone.
The need-to-know principle
Confidentiality is governed by the need-to-know principle as noted in the third point in the list above. Other staff or volunteers who work with an individual do not always need to know everything about that person. However, sometimes they do need to know certain things. Likewise, sometimes people ask for information about an individual and you need to decide whether they need to know.
Your decision about whether to share a piece of information about an individual should be based on the need of the person to know that fact in order to make decisions that improve or maintain the well-being of the individual and others. For instance, your supervisor needs to know about significant events that will affect the types of services provided to the individual and how they are delivered.
Many other situations require a judgment call. If a potential employer asks a supported employment specialist why an individual needs a particular accommodation or why the person lost the previous job, the decision about how to respond should be based on whether the information will help the employer improve the individual’s chance of success on the job. If an individual’s home support worker from another organization calls to ask if the individual was involved in a fight recently, the fact that the person signed a different oath of confidentiality is less important than why they need to know. In both situations, it is appropriate—although not always necessary—to ask why they need to know before deciding how much (if anything) to share. Suppose the individual arrived home with a large bruise and is upset but can’t explain why. Your answer, if a fight did occur, should limit itself to only those details required for the home staff to be able to give suitable physical and emotional support, just as a communication book in the home should then include only enough detail to ensure good support by workers on the next shift.
Likewise, if you are asking someone for information about an individual, you should try to make clear why you need to know. This approach demonstrates your respect for the people involved and lets the other person make an informed choice about your need to know.
Control of privacy
Ideally, sharing of personal information should be controlled by the individual being supported rather than the disability worker. ADWA’s ethics code requires that members support individuals to share personal information that others need to know in order to make good decisions. This could include preparing individuals to talk about their disability as it affects their ability to do a job with or without accommodations or why they left their previous job. Sometimes, as in the example of the individual arriving home bruised and upset, the individual may not be able to articulate what others need to know in order to be helpful.
Individuals sometimes choose to share sensitive information about themselves in public as a way of speaking up about injustice or other social problems. The information they share may make others feel uncomfortable and they may try to shut the individual down by claiming that the information being shared is “private” or “confidential.” This response reflects a lack of understanding of what confidentiality is about. It is not about keeping information secret so much as it is about the right of the individual to control what happens to their own private information. Sometimes decision-makers need to know information they would rather not know in order to make the best choices for everyone.
Limitations on confidentiality
Individuals may assume that you will not repeat anything they share with you, i.e., everything is confidential. You may be required by law to share what you learn (e.g., abuse). If an individual says they broke the law, you become an “accessory after the fact” if you maintain the secret. Individuals should be told the limits of confidentiality before they share information so they can make an informed choice about whether or not to share it. Unfortunately, private disclosures sometimes come without warning. The respectful response is to explain in understandable terms why you need to share the information with others (e.g., to get good advice for him or her, to keep people safe, to help others make good decisions.) You may not need to divulge the identity of the individual or intimate details. Likewise, your chosen advisor should respect your efforts by not trying to guess or pressure you to disclose this information.