Thoughts on Facilitated Communication – in Relation to “The Feed” on SBS ” ‘Inappropriate IQ Test’ Results in Thousands Misdiagnosed with Intellectual Disability”

I have just watched the programme that aired last night on “The Feed”: “ ‘Inappropriate IQ Test’ Results in Tens of Thousands Misdiagnosed with Intellectual Disability” and I wanted to share my thoughts.

Firstly, I would like to thank the participants in the program, their families and the people supporting them for sharing their stories.

“The Feed” presented Facilitated Communication (FC) as a communication method that enables people who have complex communication needs to access the education curriculum.

At best, FC locks a person into a communication method that requires another person to physically assist them to communicate and ensures they can never have a private conversation. At worst, FC brings into question the very authorship of the message being communicated.

One of the most problematic findings in FC research is that when the facilitator does not know what the communicator has been asked, the communicator cannot answer correctly.

Access options have changed considerably since FC was devised. Now, people can access communication devices using a switch, head controlled mouse or via eye gaze technology to select items on a screen. Occupational therapists work in this domain to assess, trial and evaluate access options for people who have complex communication needs.

Speech pathologists experienced in AAC (Augmentative and Alternative Communication) identify, evaluate and implement communication options for people who have little or no functional speech. Speech pathologists utilise evidence-based practice when selecting interventions, which means that the strategies they implement have quality evidence to support their use.

Professionals make the best clinical decisions they can with the evidence that is currently available. They consult the research in their field regularly to ensure that their practises are in line with the current data. Importantly, they re-examine their views if and when the research points them in another direction. To consider FC as a viable communication option, we need high level evidence documenting independent and unbiased communication when the communicator has been facilitated to communicate, and high level evidence documenting transitions from the use of FC to independent communication. This data is not yet available.

Currently, we have many different communication options and access methods that can be trialled through a number of assistive technology suppliers around Australia. Victorians with communication difficulties have been able to access the Victorian Aids and Equipment Program, Electronic Communication Devices Scheme to obtain an electronic communication device for many years and we now have the National Disability Insurance Scheme, through which participants can obtain communication devices and mounts to safely attach a device to a wheelchair.

We can certainly do more to improve the educational outcomes for students with complex communication needs. We should increase AAC training for speech pathologists working in schools and provide more OT support. Professionals need to be aware of what communication options are available, how they can be accessed, and what the data tells us about their effectiveness. We also need more education in the community so that families know about potential communication options and where to access services.

At present, FC cannot be considered as a communication option for people who have complex communication needs. We need to focus our intervention on strategies that have been demonstrated in the literature as being effective, and assist the people we support to communicate independently.

As professionals, we need to work towards our own redundancy – so that people with complex communication needs don’t need us to be able to communicate independently.

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