Providers that deliver services to children with developmental disabilities seem to have a similar practice in common, which is to say they have a similar problem; they tend to treat the client’s they serve as if they were someone else’s child. Presumably, they would never indiscriminately allow their own kids to be exposed in such a HIPAA and privacy-be-damned way. Of course, I am talking about the barrage of pictures they post of their clients on their business and personal social media pages (ABA is not the only field doing this, I’m looking at you, speech and OT). Keep in mind that these children are usually no older than five years old and their diagnosis, image, and progress in therapy is being shared with alarming regularity that some might label careless, irresponsible, or exploitative . Since it’s impossible to know the motivation for engaging in this behavior, for this article and thought exercise, we will assume the best and that the following are true:
First, we will assume that the practitioners posting client pictures on social media are doing so after obtaining informed consent from the child’s parents or legal guardians. This is an ethical requirement in the Ethics Code for Behavior Analysts and mandated by the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Informed consent entails more than presenting a piece of paper and asking for a signature. True informed consent involves a meeting that reveals the risks and benefits of the disclosure being requested, the purpose of the disclosure, and start and end dates for the disclosure. An honest conversation seeking informed consent would include the following: the photo of the child will be used for marketing/advertising, there is no end date for the disclosure because the internet archives everything posted, and the risks of the disclosure include criminal use of the picture in generative AI, the child’s diagnosis being known to all their future teachers and classmates, and more. Benefits of the disclosure are to be determined.
We will also assume that after obtaining the signature for the consent form, the provider uses a HIPAA-compliant camera with encryption, transfers the image to an encrypted drive on their computer, and then stores the picture in the child’s medical record along with the signed disclosure. The provider will also comply with requirements imposed by the ethics code, including a disclaimer saying that informed consent was obtained.
The legal and ethical obligations that must be met to disclose client images on Facebook are cumbersome and it is obvious that few if any providers follow through with these requirements. Even if they did, the practice is a blight on the field that causes harm to clients we serve; the practice is fraught with issues.
The Ethics Code for Behavior Analysts describes the risks involved in soliciting testimonials from current clients in the following way: “Because of the possibility of undue influence and implicit coercion, behavior analysts do not solicit testimonials from current clients or stakeholders for use in advertisements designed to obtain new clients.” Traditionally, testimonials are written statements about a service. Testimonials can and do come in other forms; images being a powerful testimonial that forms a narrative about the services being provided and the satisfaction with services by the family. Testimonials in pictorial form are egregious because they allow the provider to dictate the narrative the images form. Furthermore, posting pictures of clients on social media is always done for marketing or advertising purposes with the logical reason being to attract new clients and cast their practice in a favorable light. Some providers might call these ‘client success stories. A ‘client success story’ shows the progress a child has made due to the services received at an agency. Therefore, ‘client success stories’ are more about the effectiveness of the agency than the success of the client and are absolutely a form of advertising. Therefore, in addition to a high probability of violating HIPAA and possibly FTC Section 5, the provider has also violated code 5.07 of the Ethics Code for Behavior Analysts.
It should raise concern that most pictures of clients on social media sites show the child in treatment; this could be one on one with their RBT, a group photo during circle time, or while making a craft (particularly popular on Mother’s Day and Valentines Day among ABA providers who post PHI on social media). Also popular with these providers is the fun post of the client swinging with a big smile or going down a slide. Sometimes, the child will have a pensive look while looking at the pages in an open book. Whatever the child may be doing, the question that comes to mind is whether the pictures were taken during treatment, how much did the act of taking the picture interrupt treatment, and is insurance being billed for the photo shoot for the agency’s advertising activities. If any of the questions are answered ‘yes’, ethical and legal actions could, and perhaps should, follow. It is also interesting that some of the pictures show activities that would not be approved in a treatment plan. For instance, a Tricare client working on handwriting is not something Tricare would approve in a treatment plan, as every network provider for Tricare is aware of. The contents of the treatment plan are the only activities that are reimbursable, so in the case of the Tricare kid working on handwriting, it is possible that they are broadcasting their agency’s participation in healthcare fraud by violating the False Claims Act.
Still going on the assumption that all necessary consent forms were properly obtained, there seems to be little to no regard for the child whose picture and diagnosis of autism is being broadcast to the world. Did the provider think to ask the kid if they wanted to be all over social media? Ask the kid in 10 years when they are about to go to prom if they want their date to see pictures of them in treatment for the symptoms of autism? Does the kids teacher at school have a right to know the child’s diagnosis by doing a google search on the kids name?