Ethical issues and Severe Communication Disability

Severe communication disability (little or no speech; complex communication needs; severe communication impairment, severe communication disorder) raises many ethical issues in the clinical work setting for speech pathologists, clients, and families.

If you think about ‘ethical issues’ for clients with severe communication disability arising from any condition, what springs to mind?

So far, I have had one response that can get things started (via Twitter) – I do not identify responses nor direct quote.

Communicating for Informed Consent to Treatment: If a client has severe communication disability, how do they then take part in the informed consent process (for assessment and treatment)? The communication disability itself may make it hard for the clinician to know if they understand information to make an informed choice. This issue was raised as particularly relating to adults with communication disability. However, it could potentially arise also with children, who also have rights in relation to treatment decisions, and to being informed about their care.

So, what other issues arise? you can tweet me @bronwynah and I will write about it here (adding as they come in) or else you can comment directly onto the blog. Thank you!

Clients, families, and clinicians – feel free to respond here!

These are the issues brought through Twitter comments on ethics and AAC:

People assuming cognitive impairment if the person cannot speak – this might impact on them not being presented with information, not having consent sought (even though people with intellectual disability ought to be given information and the opportunity to give consent within their capacities according to the decision being made).

A preference for the oral modality (speech) over other modalities – are other modalities for communication explored? eg writing, gesture, use of communication aids. If speech is more highly valued and the person has little or no speech, values beliefs and attitudes towards other modalities might impact upon decisions made.

Establishing the client’s own preferences for assistive technologies or other strategies when they have no other way to communicate. This issue was raised particularly in relation to people with severe physical disabilities as well as severe communication disabilities. Also, that people with good intentions might not take the person’s preferences into account if the person ‘pushes away’ a communication device, or might assume this means rejection outright – either way, it is an ethical decision to consider the person’s preferences and whether or not to proceed with an option, in a risk/benefit approach. At which point are the person’s preferences at the time discounted or influential over the decision to proceed?

The person’s AAC system being their ‘communication’ forms part of their identity, yet vocabulary design and layout might be influenced in design by their communication partners. The ethical issues arising from this include autonomy over design as reflecting the person’s own preferences over those of their communication partners. Communication partners will need to balance their support of the person’s autonomy with the principle of ‘beneficence’ and ‘non-maleficence’ over design. It is common for this to be debated in relation to the use of ‘swear words’ or political statements on a communication board, that might not fit with the views of parents, teachers, or other communication partners. Who decides the vocabulary, and is it a matter of balancing perceived harms and benefits for both options considered? Ultimately, the AAC system needs to reflect the person’s own voice, and not those of the person’s communication partners. In the case of swear words, some risks be balanced in similar ways as by teaching children who use natural speech (e.g., the social impact of swear words and ‘pitch’ in communicating formally and informally with others, communicating when angry, communicating according to the social situation).

#AACtest – online publics in Augmentative and Alternative Communication #AACresearch

If you see this hashtag, it is added to tweets about finding who is interested in AAC research within twitter, right at this very moment!

So, if you’re reading a tweet with that on it – that’s its purpose.

If you want to write a tweet about AAC research, can you please add #AACtest?

or … #AACresearch, #AACpublic #AAConline #AACtest #AACconnect or any other one that you care to think of on the day – go to town on it!

 

Five Alive: How to run an ‘ethical history feature’ design check on a new AAC communication app

All of this information about AAC app history features should be disclosed by the developer in promotional materials. If you cannot answer these questions by looking at their promotional video or written instructions or description of the app, ask the developer. If you already have the app, it is very easy to run your own check.

Five Alive: 5 Questions for an ‘ethical history feature’ design check:

  1. Does the AAC app have a ‘history’ or ‘store’ feature included? YES or NO
  2. * Now go to the history section. Can you delete the message? YES or NO
  3. * Look at the settings and controls in the apps control panel. Is there a setting for turning the history feature ‘on’ and ‘off’? YES or NO
  4. * Does the person using the app to communicate need to use the same method of access to change the history setting, or a different method? (e.g., switch, or direct touch?) YES or NO
  5. * Is it possible ‘clear’ all messages from the history? YES or NO

If you answered ‘no’ to any of the four starred questions, there is a concern that the AAC app will not safeguard privacy and will expose the person to potential harms arising from lack of confidentiality in sensitive communications.

Why should we advocate for privacy in communications by people who cannot speak? People with complex communication needs (i.e., little or no speech) often rely on augmentative and alternative communication (AAC) systems to communicate. Many of them also have disabilities and rely upon other people on a daily basis for assistance in core activities of daily life: mobility, self-care, communication, access to education, sexual expression, and healthcare interactions. Not all people with disabilities are safe in these interactions. Research has shown that “having significant physical and communication disabilities are greater risk factors for victimization than either gender or educational level.” (Bryen, Carey, & Frantz, 2003, p.132). Therefore, it is important that all people with communication disability are afforded a way to communicate privately about their concerns, as enjoyed by other people who communicate using natural speech.

Why must we be concerned about the design of an AAC app on the ‘history’ kept of communications made using the app?Any AAC app that is developed must help safeguard the person’s right to private and confidential conversations without fear of their communications being read by a third party.  An ‘AAC app’ that does not safeguard privacy might prevent a person who relies upon it to communicate from:

– reporting abuse safely or with less risk of it being known to the perpetrator

– participating in confidential discussions with another person

– safeguarding the privacy of other people with whom they communicate or about whom they communicate.

This can impact negatively upon their employment, their healthcare discussions, their relationships with other people, and their personal safety. In that case, the AAC app might do more ‘harm’ than good. It is only with this provision of privacy and confidentiality that we might do more to ‘end the silence’ (Bryen et al., 2003) on reporting of victimization and abuse by people with complex communication needs.

Communication apps (‘AAC’ apps) that do the following do not safeguard communication privacy when using AAC to communicate with other people:

– having a history feature without user controls (i.e., that are not accessible using the same method of access as the person with communication disability needs to use the system itself)

– not having a way to turn ‘on’ and ‘off’ the history feature as desired for safeguarding confidential discussions

– not having a way to ‘clear’ or ‘delete’ history items that the person would not like to be read by any other party

Ref: Bryen, D. N., Carey, A., Frantz, B. (2003). Ending the Silence: Adults who Use Augmentative Communication and their Experiences as Victims of Crimes. Augmentative and Alternative Communication, VOL. 19 (2), pp. 125–134.