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

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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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Agosci 2017 – Part 1

Last week I attended a day of the Agosci 2017 conference and it was superb! I caught up with former clients and workmates, colleagues, and met lots of wonderful people committed to sharing knowledge about Augmentative and Alternative Communication.

Colleen Pearce, Public Advocate, began the day with an interesting presentation about her role in protecting the rights of Victorians who have a disability.

Dr. Cathy Binger’s keynote address made a big impression. We watched a cute YouTube clip of a two year old boy at a supermarket and Dr. Binger categorised his language into four language domains:

  1. Pragmatics (the reasons we communicate e.g. asking questions, commenting, requesting)
  2. Semantics (vocabulary and the types of words we use e.g. nouns, verbs, adjectives)
  3. Syntax (how we put words together in sentences e.g. subject-verb-object statements, questions with inverted auxiliary verb “Can I…?”
  4. Morphology (the little bits of language e.g. plurals, prepositions (“in”, “on”), prefixes, suffixes, contractions)

Dr Binger’s analysis challenged the popular notion that kids’ speech is dominated by requesting and highlighted the need for clinicians to target a wider range of pragmatic functions.

She recommended that we collect information about the child’s understanding of language (receptive language skills) and use language data regarding typically developing kids to offer expressive language options in line with the child’s receptive skill level.

Dr Binger spoke about the pitfalls of aligning with a particular AAC language system or vocabulary option. Instead, we should consider the individual’s needs and how each AAC option could address them. Immediate language requirements were contrasted with a person’s long term language needs and Dr Binger outlined how she uses activity displays in conjunction with the person’s AAC system to address this issue.

Her take home message: “Four domains for today, four domains for tomorrow”.

Sharing Stories with Beautiful Bunting

I recently came across a beautiful handmade product with storytelling at its heart. Karen Chatterley, aka Mrs Buttons, takes sentimental pieces of children’s clothing and creates custom-made bunting that preserves people’s memories. Precious pieces of material from first dresses, favourite tops and babies blankets are upcycled into bunting that is then embellished with buttons and ribbons and transformed into a beautiful keepsake and talking point for years to come.

When I met Mrs Buttons, we spoke about the wonderful way this product acknowledges children’s memories as important and provides children with a beautiful visual prompt that encourages them to share their stories. Mrs Buttons shared her own story about her son Harry who was sad at having outgrown a favourite pair of pajamas he had been given, which led her to devise a way to preserve the memories attached to cherished pieces of clothing. As a former teacher, Karen was also keen to encourage storytelling in families and on her Facebook page, Mrs Buttons urges parents to “tell your child the stories of where the materials came from, of birthdays and Christmases, this is your history, this is what makes your family unique and I hold that dear”.

For information about Mrs Buttons’ bunting and other products, please visit https://www.facebook.com/MrsButtonsAu?fref=ts10665836_739850472748887_6217847796707662063_n10604523_739850502748884_5589915684612110528_o

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International Communication Project 2014 (#ICP2014)

I recently volunteered to become a Communication Champion to support people living and working with communication disorders and raise awareness about the International Communication Project 2014 (#ICP2014).

The ICP2014 aims to:

  • Raise the profile and status of communication disability with international health bodies and policy makers;
  • Increase public awareness of communication disability and the severe impact it has on people’s lives;
  • Encourage people around the world to join together to make a difference in the lives of people living with communication disability

The campaign is based on three key messages:

  • Communication is vital to life
  • Communication professionals make a critical difference
  • Early intervention is key

(Source: Nation for Communication Campaign Booklet, Speech Pathology Australia)

This is a worldwide campaign, with people around the globe sharing their stories about the importance of communication and it is great to have the opportunity to join in this work at the local level.

If you would like to share your story, please contact The Communication Toolbox using the form below:

To sign the ICP2014 Communication Pledge, http://nationforcommunication.org/the-communication-pledge/

For more information, please go to www.nationforcommunication.org