Further submission

Further to our earlier correspondence, I hope you may consider this further submission. (I have sent a similar letter to the Senate Select Committee on Autism.)

Since I last wrote to you, I have heard that a veteran FC user’s funding for communication support has been slashed by the NDIS. The letter conveying this decision included the following passages. I have inserted numbers into the passage in blue, to assist me to respond to each point in turn (also in blue). My notes refer to three papers I have uploaded to the research sharing website, Academia. They can be accessed as follows:

• Davies (2019) - https://www.academia.edu/38797833/Recent Reviews of Facilitated Communication Mislead Policymakers
• Davies (2019) - https://www.academia.edu/42756096/Speech Pathology Australias flawed position on Facilitated Communication, and
• Davies (2021) - https://www.academia.edu/49548918/Comments on the 2020 Autism CRC synthesi s of research evidence Interventions for children on the autism spectrum

Excerpt from letter advising of NDIS decision

  A research paper on Facilitated Communication completed by the Technical Advisory Branch

     in 2020 (1) states that "FC is now widely recognised (2) as a discredited (3) and dangerous (4)
   communication technique and intervention. There is substantial scientific research evidence
      (5), collected through well designed controlled trials (6) and reviews (7) that shows
     facilitators influence the individual's messages (8), either consciously or unconsciously, and
    that the authorship of messages cannot be considered genuine (9)." …

   The Technical Research paper suggests that the NDlA cannot reasonably justify NDIS funding
   being used to purchase Facilitated Communication supports (10) based on:

• the established lack of scientific based evidence to substantiate the efficacy of FC (11);

• the lack of any validation documentation confirming that [the NDIS participant] has authored the messages that he is purported to have written (12); and

• the potential risk of harm to an NDIS participant (13).

   The research paper states that "this position is consistent with that of Speech Pathology
    Australia (14) and the American Speech and Hearing Association (15), the peak national
   bodies and subject matter experts (16) on augmentative and alternative communication
   supports and therapies for people with complex communication needs." 
  

Notes addressing the above passage

1.  The FC user’s family requested a copy of this report, but it has not been made available. This

       is surely inappropriate in light of the NHMRC's adoption of GRADE, with its emphasis on
   transparency in decision-making. (Please see section 3.4.3 of Davies, 2020 and section 3.4 of
    Davies, 2021).  It is also inappropriate by all standards of open scientific deliberation.  It has
  been suggested that the hallmark of science is bending over backwards to prove oneself
   wrong. Surely this also implies a willingness to open one’s position to the kind of external
     criticism that may shape and challenge it?

2.   If “FC is now widely recognised as a discredited and dangerous communication technique”,
     this is largely the result of a sustained anti-FC campaign that has little to do with science.

• 3. As noted above, I have written three detailed papers addressing the research commonly cited to “discredit” FC.

I would be genuinely grateful to engage in a discussion with anyone who might explain to me how I may have misunderstood the situation or where my arguments fall short, but no such discussion is available. It seems that critics of FC are free to pronounce that it has been “discredited”, but reflecting the enormous power imbalance in this debate, there is no mechanism available to ensure that those most affected by the claim will be heard.

• 4. The claim that FC is dangerous appears ironic, given the massively increased risks that pertain when professional support is dismantled. GRADE emphasises the need to consider both harms and benefits, but critics of FC focus entirely on potential harm. There has been no attempt to work with the FC community to identify the perceived benefits that lead families like ours to fight so hard for access to FC. Clearly, we believe that those benefits outweigh well-managed risks.
• 5. The claim that “there is substantial scientific research evidence” to discredit FC is laughable. Recent reviews identified only four purportedly negative primary studies published since the turn of the century. Only one of those was published in the last decade although it reports research undertaken for a thesis submitted in 2005. While the reviewers described methodological problems with all four studies, the shortcomings were taken to discredit only those results that were potentially supportive of FC. At least three of the four studies reported such results, although the review reported those studies as unequivocally discrediting FC. Please see Davies (2019, section 7) for more information.
• 6. “Controlled trials” of FC are not “well designed.” They are overwhelmingly based on demonstrably poor understanding of what FC is (and isn’t), with resulting poor practice. Many are also characterised by inappropriate selection of subjects; poor training delivered to FC users and facilitators; and intrusive “controls” highly likely to alter both the support needs of the subjects and the nature of support that can be provided. The most significant shortcomings however relate to the construct validity of the studies - in particular the construct validity of the outcome measures used, as discussed in sections 5 and 6 of Davies (2019). Please see point 11 regarding the potential impact this may have on the quality rating of controlled trials under GRADE.
• 7. The suggestion that reviews of FC have been “well designed” has been addressed by the recent umbrella review which excluded all reviews of FC undertaken within the study’s temporal constraint because they were unsystematic empty or both. Despite this the umbrella review mistakenly reports “a null effect on general outcomes” for FC because it makes the common but potentially devastating error of confusing “no evidence of an effect” with “evidence of no effect.” As an empty review on the topic the umbrella review should not have recorded any findings for FC. See Davies 2019 and section 5 of Davies 2021.
• 8. The suggestion that facilitators may influence communication is not disputed, but the interpretation of this as “control” is. The concept of “control” does not take account of the possibility that at times-for example when unsure what is required of them or anxious

About presenting a wrong answer - FC users may actively and intentionally seek cues from their facilitators.

Please see section 5 of Davies (2019)

9. Assertions that the authorship of FC “cannot be considered genuine” are, I submit, founded given the current state of evidence. None-the-less, such assertions have had a seriously deleterious effect, not only on FC users but – because the general public don’t always discriminate between different AAC techniques - on AAC users in general. One definition of hate speech describes it as speech “that contributes to the oppression experienced by a social group by calling into question their intelligence, character, or rights and that undermines their ability to express themselves, be understood, and be taken seriously” (Stubblefield, 2011). This has certainly been our experience since 2011, when the campaign against FC began in Queensland (see Davies, 2020, section 3.5). My son, with the support of a wonderful team of academics, educators, therapists and others, had turned his life around in his last years of school. When he completed his senior program in 2010, he was so eager to take his place in society, and he had so much to offer. Now doors have closed to him, and he spends his time in segregated settings with limited access to communication support.

10. The decision letter sent to the FC user mentioned above stated that “the NDlA cannot reasonably justify NDIS funding being used to purchase Facilitated Communication supports”. I cannot comment on any process outlined in the “research paper on Facilitated Communication completed by the Technical Advisory Branch in 2020”, because it is not publicly available. However the NHMRC provides clear national guidelines for the research to policy process based on GRADE (please see Davies, 2021). If those guidelines had been followed, I submit that a different outcome would have been forthcoming. If the NDIA has opted to use an alternative to the national standard, surely they have a responsibility to provide details and a justification for their decision? Please see point 1 (above) regarding the importance of transparency in this process.

11. The apparent “lack of scientific based evidence to substantiate the efficacy of FC” is, in part, an artifact of the mistaken practice of equating study quality with a “hierarchy of evidence”. If the GRADE approach to rating the quality of evidence were to be applied, it seems likely that the quasi-experimental evidence commonly taken to discredit FC would be “rated down” due to its reliance on a surrogate outcome measure of dubious “patient importance”. Twenty-first century mixed method studies that tend to support FC would, under those circumstances, provide the “best available evidence” and reviews would draw very different conclusions to those currently on record (please see section 3.3.2 of Davies, 2021). It is, nonetheless, true that very little good quality research supportive of FC has been published in recent years. Please see section 11 of Davies (2019) regarding deliberately contrived publication bias.

12. With regard to “the lack of any validation documentation”, it should be noted that the FC user’s family and support team provided extensive evidence of his communication over a fourteen year period. This was dismissed because the NDIS is only interested in evidence of message passing. Please see Davies (2019), section 5, regarding the validity of message passing as evidence of, or a surrogate for, communicative competency.

13. With regard to “the potential risk of harm to an NDIS participant”, please see point 4. Shane Clifford, in his paper for the DRC titled “Hierarchies of Power”, stated that “Understanding theoretical debates about independence, dependence, and interdependence helps us to balance systems that elevate care and those that

empower autonomy (the dignity of risk). They are a reminder of the important role played by parents and support workers in the amelioration of risk and care of some people with disability, as well as the danger of paternalism and the goal [of] maximising independence. Support and care are not the opposite of independence,

but facilitate it“ (p. 35).

14. Regarding the position of Speech Pathology Australia (SPA), please note that SPA has advised the FC user’s family that their clinical guideline is intended for SPA members only, not for adoption by external bodies such as the NDIA. They have also advised that, although their guideline was reviewed as recently as last year, their Board of Governors has approved another full review by (it is implied) a fresh project officer and working party. (Please see letter from SPA, attached.) Perhaps this decision was made in recognition of Professor Guyatt’s appraisal of the 2020 SPA guideline (Appendix C of Davies, 2021). (For my own critique of the 2020 SPA clinical guidelines, please see Davies (2020).

15. With regard to the position of the American Speech and Hearing Association (ASHA), please see point 7 (above), Davies (2019) and section 5 of Davies (2021), which discuss the unsystematic reviews of FC on which the ASHA position statement is based.

16. With regard to “the peak national bodies and subject matter experts”, please note that expert opinion is explicitly excluded by GRADE because it does not describe what type of evidence is being used as the basis for interpretation. Thus, any consistency between the NDIS and other positions statements is irrelevant. Please see section 3.4 of Davies (2021).

Every time an FC user’s support team is dismantled, the potential for reviving professional support and “best practice” in a manner suitable for future research becomes more remote.

I apologise for the length of this email. If I were to pick one focus for my concern, it would be the ease with which the NDIS has shifted from citing the now discredited reviews of FC, to citing a secret internal report as justification for their removal of communication support for some FC users. Do you have any suggestions as to how I may obtain a copy of this document?

I understand that the closing date for submissions to your committee has passed, however I hope you may consider this email as a subsequent submission.

Yours sincerely,

Level 1/114 William Street

T 61396424899 office@speechpathologyaustralia.org.au

6 Speech

§& Pathology Australia

Melbourne Victoria 3000 F 61396424922 www.speechpathologyaustralia.org.au

13 July 2021 Dear Cathie, Re: Speech Pathology Australia’s AAC Clinical Guideline

Further to your recent enquiries, | wish to confirm that Speech Pathology Australia will be commencing the process to review the Augmentative and Alternative Communication (AAC) Clinical Guideline in 2021. The review will commence with a scoping project to identify the breadth and scope of the future practice document/s to support speech pathology practice.

Speech Pathology Australia acknowledges speech pathology practice in disability and multimodal communication is rapidly developing and changing due to a range of factors that include new and evolving understandings of best practice for supporting people with complex communication needs, that extend beyond AAC, and the impact of funding models such as the National Disability Insurance Scheme and my Aged Care.

The scoping project will involve consultation with speech pathologists, stakeholders and people who have complex communication needs, their families, and their support networks. Speech Pathology Australia will be aiming to advertise for a project officer in August to undertake the initial scoping project with recommendations, regarding the breadth and scope of the practice document/s to support speech pathologists working with individuals with complex communication needs, to be presented to Speech Pathology Australia’s Board of Directors by the end of the year.

In the development/review of the future practice documents | wish to highlight Speech Pathology Australia acknowledges the National Health Medical Research Councils (NHMRC)’s “Guidelines for the Development of Clinical Guidelines” represent international best practice in the development of clinical guidelines. Speech Pathology Australia continues to aspire to these principles however is not obligated to comply with the standards.

To strengthen the governance and quality of the development and review of its practice documents Speech Pathology Australia has recently initiated the following: e Strengthening of its policy and procedures for the development of practice documents to support wide ranging, extensive consultation with Speech Pathology Australia members, ineviduals and families who access speech pathology services, community organisations and other relevant stakeholders e Formation of working parties to develop practice documents that are inclusive of individuals from a range of stakeholder groups, including from the community, with a diverse range of expertise and experience e Independent review of the content of all practice documents prior to being made available to SPA members and stakeholders. e Only using the title “Clinical Guideline” if the document aligns with the processes for NHMRC. Future documents will be called “Practice Documents“ e Appointment of an ongoing position to coordinate the development and review of SPA documents.

| hope the above information assists your understanding of the next steps to review the AAC Clinical Guideline and Speech Pathology Australia’s initiatives to improve the quality of practice documents into the future.

Kindest regards, Gail Mulcair Chief Executive Officer The Speech Pathology Association of Australia Limited ABN 17 008 393 440