Submission 166 — Ms Cathie Davies (166.1 Supplementary to submission 166) — Select Committee on Autism | External submission

Thank you for your email dated 15 June, which acknowledged my submission to the Select Committee on Autism. I hope you may consider this further submission.

Since making that submission, 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_Communicat ion_Mislead_Policymakers
Davies (2019) - https://www.academia.edu/42756096/Speech_Pathology_Australias_flawed_positio n_on_Facilitated_Communication, and
Davies (2021) - https://www.academia.edu/49548918/Comments_on_the_2020_Autism_CRC_synt hesis_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

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?

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. In 2019, I provided details of this campaign in my “preliminary submission” to the Disability Royal Commission (attached). It has continued, although some of the information contained in my preliminary submission is now outdated. In particular, please see point 14 (below).
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.
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.
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.
“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 characterized 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.

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).
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)
Assertions that the authorship of FC “cannot be considered genuine” are, I submit, unfounded given the current state of evidence. 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 live 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.
The decision letter 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.
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.

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.
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).
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, 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).
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.
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 Inquiry into the services and life outcomes for autistic people in Australia has passed, however I hope you may consider this email as a subsequent submission.

Yours sincerely,

Cathie Davies

I am writing to advise you of my intention to make a submission, on behalf of my son, on the topic of Facilitated Communication (FC). In particular, I want to draw your attention to systematic exclusion of the views of FC users and their supporters from policy deliberations at State, National and International levels since 2011.

I do intend to write a significantly more detailed submission. However, the matter is complicated and it may take some time for me to tell the full story, particularly as my caring duties are very demanding at the moment. I have been told that some anti-FC individuals and organisations plan to make their own submissions, so I wanted to foreshadow my intentions. Please let me know if there is any particular information you may find informative on this topic, and I will try to provide it.

FC is an Augmentative and Alternative Communication (AAC) access strategy that may enable some individuals with complex communication needs to point to objects, pictures, symbols, words or letters for communication. The strategy has always been controversial, however since 2011 there has been a concerted campaign to stop it being used at all. This has had a profound effect on the opportunities available to my son, who relies on the strategy for novel communication.

As background, the strategy was introduced to Queensland after a well-designed longitudinal study undertaken in 1992 (Department of Family Services and Aboriginal and Islander Affairs, 1993). The relevant Department (whose name has changed several times since 1992) became a lead agency in the strategy and developed the world’s first accredited training to promote best practice. Best practice guidelines were developed based on local experience and on other guidelines produced in Australia and overseas. In 2005 and 2006, the Queensland guidelines were formalized in Departmental policies and procedures (e.g. Disability and Community Care Services, 2005; Disability Services Queensland, 2005a, 2005b & 2005c; Disability Services Queensland, 2006). In 2012, authors of a policy review addressing Communication Support for People with Complex Communication Needs stated “we were quite impressed with the manner in which the procedures address most of the existing concerns about FC” (Mazerolle & Legosz, 2012, p. 9).

Despite this, the Queensland review recommended that “the use of FC ought to be phased out” (Mazerole and Legotzs, 2012, p.18). In the same year, SPA’s Clinical Guidelines on AAC stated: “FC remains an approach with little supportive evidence and a preponderance of evidence that contraindicates its use, and its use is not recommended” (SPA, 2012, p.30). Since 2012, professional oversight, training capacity and regulated practice have progressively been dismantled in both the public and private sectors. This, combined with diminished opportunities for consumers to use the strategy (which many had spent several years learning), has significantly increased the risk of harm to FC users in Queensland.

The Queensland reviewers’ recommendation that support for FC should be phased out appears surprising, given their acknowledgment that Departmental guidelines “address most of the existing concerns”. Perhaps an explanation may be found in their qualifying statement: “what will be important is compliance with the policy, as well as stringent monitoring of that compliance” (Mazerole and Legotsz, 2012, p9). This suggests that their concern centred, not on the strategy itself, but on the Department’s inconsistent commitment to its own policy. Nonetheless, if compliance and stringent monitoring are required to reduce risk, abolition of Departmental and professional oversight seems likely to increase risk. It would appear,

therefore, that the review’s recommendation to phase out FC was merely designed to ensure that the risk became someone else’s problem.

My son was introduced to FC in 1996, at the age of three. Although his skill grew each year, his access to the strategy varied over time and from setting to setting. Again, this reflected equivocal commitment to the strategy by Queensland Government departments, including the Education Department. (The Education Department had its own policy on FC, although it lacked the detail of the Disability Services Queensland guidelines.) For my son, inconsistent access to FC, particularly in his special school setting, contributed to a severe crisis during his “middle school” years.

After considerable conflict with the school and the Education Department, an intensive behaviour support plan was formulated with input from senior academics and educators, for implementation in the school setting. FC, as one element of multimodal communication, was central to the plan as it allowed my son to participate in planning meetings and in a broad range of educational and community activities during 2008-2010. It transformed his world and the image he held of himself. In particular it allowed him to see himself as a communicator with agency and the ability to impact decisions and to contribute to society. I cannot bear to imagine how things may have turned out if we had not had the intensive institutional and professional support required to turn the situation around, however it seems extremely unlikely that such support would be available under similar circumstances today.

My son left school at the end of 2010 and, thankfully, he continues to do well, with excellent support in his current settings. However, since 2012 and most particularly since 2014, access to the broader community and general respect for his communication have been severely curtailed. Even in Queensland, where FC was well-supported until 2011, many decision-makers have absorbed the anti-FC message to the extent that practitioners are likely to be viewed as dishonest charlatans, parents as gullible hope junkies, and FC users as puppets with no agency or awareness. It is no wonder, under the weight of such prejudice, that researchers are unwilling to consider further investigation of the strategy.

Perhaps the most insidious aspect of this change is the unwillingness of decision-makers to discuss the topic, or even acknowledge that it has influenced decisions on funding or program access. It is impossible to fight prejudice when it has been so fully absorbed in community, institutional, and professional attitudes.

One of the advisors to, and a driving force behind, the Queensland review was also the project officer responsible for the Speech Pathology Australia (SPA) Clinical Guideline on AAC. She went on to co-author reviews for the International Society for Augmentative and Alternative Communication (ISAAC) (Schlosser, Balandin, Hemsley, Iacono, Probst, & von Tetzchner, 2014), and for the American Speech-Language-Hearing Association (ASHA) (Hemsley, Bryant, Schlosser, Shane, Lang, Paul, Banajee, & Ireland, 2018). Each of these four exercises, the SPA Clinical Guideline and the Queensland, ISAAC and ASHA reviews, has been characterized by opaque process, extremely selective treatment of evidence, and exclusion of input from consumers and from practitioners whose scope of practice includes FC. None can be seen as an independent replication of the other reviews. Rather, they must be recognised as four parts of a single anti-FC campaign that has been successful largely because the group most severely impacted is very small and very powerless.

In the wake of the ISAAC and ASHA reviews, a rash of “Position Statements” have been produced by organisations around the world, each relying on the same – mostly twentieth century – research. The situation has become self-perpetuating as position statements cite other positions statements as evidence against FC. (Note that position statements cannot be seen as “evidence” in this way.)

The momentum of this campaign is continuing. Some of my current concerns include the following:

•     The SPA Clinical Guideline is currently being updated.  I am aware of this only because

it was obliquely reported at https://twitter.com/BronwynHemsley/status/1136052895671934976 . The apparent secrecy of this update process appears to make a mockery of SPA’s purportedly foundational commitment to collaboration (SPA, 2019).

The abovementioned tweet suggests that the project officer who was responsible for the 2012 update (see https://twitter.com/BronwynHemsley/status/78023198876250112 ) is also involved in the current update. This is of concern. Most scientists recognise that research may become outmoded due to new technology, new information, or new theoretical understanding. By considering only an extraordinarily narrow range of very dated research, and by expressing opposition to new research (see https://twitter.com/BronwynHemsley/status/1143990239725178880 ), the project officer appears to demonstrate a stronger commitment to dogma and the politics of “controlling the message” than she has to scientific truth.
The project officer has announced her intention to approach the Disability Royal Commission to promote her anti-FC agenda (https://twitter.com/BronwynHemsley/status/1097380666163904512 ).
She also appears to be attempting to prompt a negative response from the NDIS in relation to FC and related services (see https://twitter.com/BronwynHemsley/status/1153742598785290240 ). I am unaware of any clearly articulated position on FC by NDIS. Innuendo implying that FC cannot be supported is extraordinarily damaging, as it leaves service providers unsure of where they stand. This may force some to cease offering FC support, and others to offer services “under the radar”. Either response is likely to increase risk.
A Queensland-based academic psychologist has tweeted that she would like to see use of FC by speech pathologists “reported/policed” (see https://twitter.com/Jess_Paynter/status/1146533274790985728 ). The psychologist has published extensively with the project officer responsible SPA’s Clinical Guideline on

Evidence Based Speech Pathology Practice for Individuals with Autistic Spectrum

Disorder (SPA, 2016). The model of Evidence-Based Practice (EBP) promoted in their joint papers appears to focus exclusively on published research, identifying little or no role for clinical expertise or for the lived experience of stakeholders (e.g. Paynter, Luskin-Saxby, Keen, Fordyce, Frost, Imms, Miller, Trembath, Tucker & Ecker, 2019; Trembath, Paynter, Keen & Ecker, 2016). This is significantly at odds with the model of EBP based on Evidence-Based Medicine, which is publicly endorsed by SPA (2010, 2019).

I hope my subsequent, more detailed submission will make you aware of the very biased approach that has been taken to FC policymaking since 2011, and also the impact this has had on my son and others who use the strategy. In the interim, you may be interested to view:

My 2014 submission to the Senate inquiry into speech pathology services in Australia (http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs /Speech_Pathology/Submissions, submission number 129), which was based on my 2012 submission to the Queensland Government’s Review of Communication Support for People with Complex Communication Needs Policy, and my 2012/13 submission to ISAAC’s ad hoc committee to develop an official position statement on FC.
2018 feedback from FC users and their supporters, and from some highly regarded professional therapists and researchers, to ASHA’s ad hoc committee to develop an official position statement on FC - https://unitedforcommunicationchoice.org/letters-to asha/ .
My critique of recent FC reviews, uploaded to Academia earlier this year (Davies, 2019) (https://www.academia.edu/38797833/Recent_Reviews_of_Facilitated_Communication_ Mislead_Policymakers ).

My submissions to the various reviews have generally taken an academic viewpoint because, by 2011, I was already painfully aware that accounts of my family’s experience would not be valued. (My submissions were ignored anyway.) Please do not be deceived by the apparently impersonal nature of my previous writing. The anti-FC campaign has had an intensely personal impact on my son, our family, and the FC community in Queensland and in other States.

At the first sitting of the Royal Commission, the Chair (the Honourable Ronald Sackville AO QC) made many comments that gave us hope, in particular:

“We have to ensure that unheard voices are finally heard”; and
“The most important part of the Royal Commission’s work is our engagement with people with disability, their families and supporters. Your contributions will be the heart and soul of this Royal Commission. You are the key to its success.”

I hope, with your assistance, that my submission may help to bring the FC debate into the open and allow it to proceed in a more balanced and transparent fashion. Until this occurs, people like 6

my son will continue to wait, in desperate silence, for their turn to take their place in society. This is cruel and unusual punishment.

Davies, C. (2019). Recent Reviews of Facilitated Communication Mislead Policymakers. https://www.academia.edu/38797833/Recent_Reviews_of_Facilitated_Communication_References

Mislead Policymakers

Department of Family Services and Aboriginal and Islander Affairs. (1993). The Queensland

report on facilitated communication. Facilitated Communication: a one year project to investigate the application and implications of using the technique with a group of people with severe intellectual disabilities. Report prepared by the project steering committee, Division of Intellectual Disability Services, Brisbane, Queensland.

Disability and Community Care Services (DCCS). (2005). Communication Support for People with Complex Communication Needs policy.

Disability Services Queensland (DSQ). (2005a). Facilitated Communication Procedures.

Disability Services Queensland (DSQ). (2005b). Practice Guidelines: Communication Support

for People with Complex Communication Needs: Community and Specialist Services

Disability Services Queensland (DSQ). (2005c). Practice Guidelines: Communication Support

for People with Complex Communication Needs: Accommodation Support and Respite

Services

Disability Services Queensland (DSQ), 2006. Practical Guidelines for Communication Support

Hemsley, B., Bryant, L., Schlosser, R.W., Shane, H.C., Lang, R., Paul, D., Banajee, M., & Ireland, M. (2018). Systematic review of facilitated communication 2014–2018 finds no new evidence that messages delivered using facilitated communication are authored by the person with disability. Autism & Developmental Language Impairments, 3, 1-8. https://doi.org/10.1177%2F2396941518821570

Mazerolle, P., & Legosz, M. (2012). Facilitated Communication and Augmented and Alternative Communication: A review. http://www.communities.qld.gov.au/resources/rti/disclosure log-dl-16-file01.pdf

Paynter, J., Luskin-Saxby, S., Keen, D., Fordyce, K., Frost, G., Imms, C., Miller, S., Trembath, D., Tucker, M., & Ecker, U. (2019). Evaluation of a Template for Countering Misinformation—Real-world Autism Treatment Myth Debunking. PLoS ONE 14(1): e0210746. https://doi.org/10.1371/journal.pone.0210746 Schlosser, R.W., Balandin, S., Hemsley, B., Iacono, T., Probst, P., & von Tetzchner, S. (2014). Facilitated communication and authorship: a systematic review. Augmentative and Alternative Communication, 30(4), 359-368. doi: 10.3109/07434618.2014.971490

Schlosser, R.W., Balandin, S., Hemsley, B., Iacono, T., Probst, P., & von Tetzchner, S. (2014). Facilitated communication and authorship: a systematic review. Augmentative and Alternative Communication, 30(4), 359-368. doi: 10.3109/07434618.2014.971490Speech Pathology Australia (2012). Clinical Guideline Augmentative and Alternative Communication. Melbourne: Speech Pathology Australia.

Speech Pathology Australia. (2010). Position Statement: Evidence-Based Practice in Speech

Pathology. https://www.speechpathologyaustralia.org.au/SPAweb/Members/Position_Statements/SP

Aweb/Members/Position_Statements/Position_Statements.aspx?hkey=b1a46941-246c-

4609-bacc-1c1b5c52d19d

Speech Pathology Australia (2012). Clinical Guideline - Augmentative and Alternative

Communication. Melbourne: Speech Pathology Australia.

Speech Pathology Australia. (2016). Evidence Based Speech Pathology Practice for Individuals

with Autism Spectrum Disorder. https://www.speechpathologyaustralia.org.au/SPAweb/Members/Clinical Guidelines/spa

web/Members/Clinical Guidelines/Clinical Guidelines.aspx?hkey=f66634e4-825a-4f1a-

910d-644553f59140

Speech Pathology Australia. (2019). Professional Standards for Speech Pathologists in Australia

Working Draft v6 7 October 2019.

https://speechpathologyaustralia.org.au/SPAweb/Resources For Speech Pathologists/C

BOS/Stakeholder Consultation/SPAweb/Resources for Speech Pathologists/CBOS/CB OS_Review_-_Stakeholder_Consultation.aspx?hkey=770bc099-d9fe-4ec4-ac70 d0c9bd4ec584 .

Trembath, D., Paynter, J., Keen D. & Ecker, U. (2016). “Attention: Myth Follows!” Facilitated

Communication, Parent and Professional Attitudes towards Evidence-based Practice, and

the Power of Misinformation. Evidence-Based Communication Assessment and Intervention. DOI: 10.1080/17489539.2015.1103433

Level 1/114 William Street T 61396424899 office@speechpathologyaustralia.org.au Melbourne Victoria 3000 F 61396424922 www.speechpathologyaustralia.org.au

ry Speech

Pathology

& Australia

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) “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, individuals 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,

Submission 166 — Ms Cathie Davies (166.1 Supplementary to submission 166) — Select Committee on Autism