DOCUMENT 7 FOI 23/24 - 0809
NDIA Research Paper: Facilitated Communication
Purpose of paper: This paper has been developed to clarify National Disability Insurance Agency (NDIA) delegate decision making regarding facilitated communication (FC). Specifically: a. Is it appropriate for the National Disability Insurance Scheme (NDIS) to fund FC? b. Does FC meet the reasonable and necessary support criteria, as outlined in the NDIS Act 2013 and NDIS (Supports for Participants) 2013? The key issue with FC is that it is a communication technique that is a widely discredited and a potentially harmful and unethical practice, yet it continues to be made available as a support to people with complex communication needs. Some NDIS providers continue to provide FC support to participants. Note: Given the wealth of evidence based research explained in this paper, which clearly identifies the ethical, legal and choice and control issues associated with FC, and potential to cause harm to the participant, it is not recommended that NDIS funding be used to access facilitated communication. Description of support or intervention FC, also referred to as ‘supported typing’, ‘assisted typing’ or ‘hand over hand’ amongst other things, is a communication technique that ‘involves a facilitator touching the person with disability’s hand, elbow, shoulder, body, keyboard or alphabet board (‘rapid prompting’) in order that the person with disability points, types, or selects messages’1. FC can be traced back to the 1960s in Denmark and became popular in Australia during the 1970s. FC is now widely recognised as a discredited and dangerous communication technique and intervention. There is substantial scientific research evidence, collected through well designed controlled trials and reviews that shows facilitators influence the individual’s messages, either consciously or unconsciously, and that the authorship of messages cannot be considered genuine. In 1994, the American Psychological Association (APA) declared that there was no scientific evidence proving that FC worked, and that it constituted “immediate threats to the individual civil and human rights” of the person being facilitated2. One of the primary concerns, both scientific and ethical, was the issue of “authorship”: whether the thoughts being expressed truly arise from the facilitated, and not the facilitator. The APA was soon joined by a range of leading professional and scientific organizations, such as the American Speech-Language-Hearing Association and the American Academy of Pediatrics, and by the late ‘90s, facilitated communication proponents were largely dismissed. Currently in Australia there is a general opposition to FC from various organisations operating to assist people with severe communication disabilities, including The Victorian Advocacy League for Individuals and Disabilities Inc. (VALID) and Speech Pathology Australia, both holding strong positions on the subject, based on there being no scientific evidence of its validity. Despite the prevalent research establishing lack of efficacy and ethical issues and discrediting the validity of FC in general, it continues to be used by some disability service providers in Australia. Targeted cohorts FC can be used by both adults and children with complex communication needs restricting their ability to communicate and participate freely and independently in community. The majority of literature available indicates the technique is predominantly aimed at children with autism and people of all ages with intellectual disabilities compromising communication ability.
1 Speech Pathology Australia, (2012), Augmentative and Alternative Communication Clinical Guideline. Melbourne, Speech Pathology Australia, p. 29. 2 The American Psychiatric Association Council of Representatives, (1994), Resolution of Facilitated Communication, https://www.apa.org/about/policy/chapter-11
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Overview of literature The literature review identifies a significant amount of high quality, peer reviewed research on FC, consistently disproving the efficacy of FC as a legitimate communication technique and disability support. In 2018, a Systematic review of facilitated communication 2014–2018 was completed by American and Australian academics3. The review found no new evidence supporting that messages delivered using facilitated communication are authored by the person with disability. This systematic review analysed English language articles about FC published in the peer reviewed literature since 2014. The review concluded that there: • were no new studies on authorship and there remains no evidence that FC is a valid form of communication for individuals with severe communication disabilities; • continue to be no studies available demonstrating that individuals with communication disabilities are the true authors of the messages generated using FC; and • is substantial peer-reviewed literature that is critical of FC and warns against its use. Personal testimony and anecdotal reports from users are the main available evidence supporting the use of FC, which cannot alone be considered a reliable, quality evaluating tool.
The only other open source document found in support of FC was a submission to the 2014 Senate Enquiry into the Prevalence of different types of speech, language and communication disorders and speech pathology services in Australia. The submission was made by Queensland Facilitated Communication Training (FCT) ‘FCT QLD Inc.’, which also appears to go by the business name ‘Empowered Facilitated Communication Training’. The credentials or qualifications behind FCT QLD Inc are not available and in the submission they identify as: • FCT Qld Inc is an incorporated Association of key stakeholders from a range of backgrounds that is committed to providing best practice, information and networking to people who require physical support as an accommodation to movement difference and diversity because “Not being able to speak does not mean that you have nothing to say”. The final 2014 Senate Enquiry report did not reference the FCT QLD Inc submission, which is likely due to the unscientific nature of the document. A full review and evaluation of available research, including links to references, can be found in Appendix A. Associated risks and application under NDIS legislation In addition to the comprehensive evidence based research discrediting FC as an effective communication technique, there are further ethical, safety, human rights, and legal risks associated with the use of FC. An NDIS funded support must meet all the reasonable and necessary criteria set out in section 34 of the NDIS Act 2013 and NDIS (Supports for Participants) Rules 2013. In general, when considering the primary purpose or benefit of facilitated communication (to assist a person to communicate), it does not meet a number of reasonable and necessary criteria namely (s34.1.a, b, d) and in inconsistent with General principles outlined in the Act (s4, 4, 6, 8, 10, 11.a, c, 12, 13) and Supports for Participants Rules (2.3.a, b, d, 3.2, 3.3, 5.1). Good practice The Supports for Participant Rules 2013 (3.2, 3.3) states that: • In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to consider the available evidence of the effectiveness of the support for others in like circumstances. That evidence may include: a) Published and refereed literature and any consensus of expert opinion;
3 See literature review below.
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b) The lived experience of the participant or their carers; or c) Anything the Agency has learnt through delivery of the NDIS. There is no quality evidence to support the validity and efficacy of FC as a supported communication technique, making it not ‘current good practice’. Choice and control and reasonable risk A General principle in the NDIS Act 2013 states that: • People with disability have the same right as other members of Australian society to be able to determine their own best interests, including the right to exercise choice and control, and to engage as equal partners in decisions that will affect their lives, to the full extent of their capacity (s4.4.8). Another General principle in the NDIS Act acknowledges that: • People with disability should be supported to exercise choice, including in relation to taking reasonable risks, in the pursuit of their goals and the planning and delivery of their supports (s4.4.4). Choice and control is fundamental in NDIS planning. Typically in planning, if a participant can demonstrate that all other conventional therapies have been exhausted and they can prove that alternative therapies are a beneficial support (reasonable risk), they will be considered on a case by case basis. However, FC is different because it inherently undermines the participant’s capacity for choice and control and is fundamentally misaligned to this key principle. FC should not be considered a reasonable risk in planning considerations because the risk of harm and abuse, combined with the potential to override ones right to communicate their own thoughts outweighs any perceived benefit. FC risks a person’s individuality and identity FC also has the capacity to misrepresent a person’s wishes, personality and individuality and cannot be viewed as a valid means to communicate important decisions about someone’s life. VALID highlight this issue in their position statement saying the advocacy league are “concerned that FC practices, rather than serving to unlock the potential of people with a disability, might actually serve to obscure and oppress the development of their true character and identity”. Communication as a human right and consent There is much addressed in the literature with regard to the human rights and ethics perspective of FC, with organisations who oppose the technique including such in their positions statements. FC is incompatible with the concepts of autonomy, freedom of expression, personal agency and self- determination. Surrounding this is the controversy of sexual abuse, where non-verbal children and adults purportedly used facilitation to make allegations of sexual abuse against family members, care givers, and others. For example: • The International Society for Augmentative and Alternative Communication (ISAAC) position statement on FC advises the use of FC appears to be in violation of several articles of the United Nations Conventions on the Rights of Persons with Disabilities (i.e., Articles 12, 16, 17, and 21) as it has been shown to prevent individuals without sufficient spoken language from using their own “voice.” • Speech Pathology Australia suggests speech pathologists need to be aware that the act of using FC to ‘facilitate’ a person to point to letters, words, or messages might expose the person with complex communication needs to undue influence, manipulation, and exploitation. • The American Psychiatric Association Council of Representatives asserts that specific activities contribute immediate threats to the individual civil and human rights of the person with autism or intellectual disability.
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• VALID is concerned that the personal or professional interests of those who are practising or promoting FC might sometimes be in conflict with the rights and interests of the person with a disability. Typically any NDIS related practice that involves speaking or making decisions on someone else’s behalf requires formalised legal nominee or guardianship appointments. However expressed consent cannot be provided reliably using FC. Article 21 of the UN Convention on the Rights of Persons with Disabilities states that: persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice, as defined in article 2 of the present Convention, including by: (a) Providing information intended for the general public to persons with disabilities in accessible formats and technologies appropriate to different kinds of disabilities in a timely manner and without additional cost; (b) Accepting and facilitating the use of sign languages, Braille, augmentative and alternative communication, and all other accessible means, modes and formats of communication of their choice by persons with disabilities in official interactions; For the purposes of the present Convention: • “Communication” includes languages, display of text, Braille, tactile communication, large print, accessible multimedia as well as written, audio, plain-language, human-reader and augmentative and alternative modes, means and formats of communication, including accessible information and communication technology4; Lack of official training or regulated practice The Raising Children Website, which is funded by Department of Social Services (DSS) Australia, advises that anyone can become a FC facilitator and to contact an NDIA planner, NDIS early childhood partner or NDIS local area coordination partner, if looking to find a facilitator. The Raising Children Website also warns that this intervention can be harmful and has potential risks, including making a child more passive and less likely to initiate intervention. For child participants, particularly those accessing supports under ECEI, FC contradicts the capacity building and early intervention philosophy. ECEI is about building capacity to becoming independent, rather than relying on someone to guide them. A search of the Australian Skills Quality Authority (ASQA) database indicated that there were no registered training organisations or registered courses either existing, or in development, on the subject of FC. Desktop research results only found one FC training workshop in Australia being run out of local organisations in Queensland, such as Uniting Care, by a group called ‘Empowered Facilitated Communication Training’. The training states that there is ‘no previous experience required… [And] this workshop is suitable for parents, teachers, support workers and other professionals in the disability sector’. There are no credentials or qualifications available. Data Capture s47E(d) - certain operations of agencies
4 United Nations, (2018), Convention on the Rights of Persons with Disabilities, https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf
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s47E(d) - certain operations of agencies
Best practice – Augmentative and Alternative Communication supports and techniques As a Commonwealth agency, the NDIA has a duty to represent the interests of people with disability and align its policies and procedures with evidence based best practice. FC is a discredited communication technique. Speech Pathology Australia state that: • ‘FC remains an approach with little supportive evidence and a preponderance of evidence that contraindicates its use, and its use is not recommended’5. There are many other evidence based augmentative and alternative communication techniques and aids and equipment to support a person with complex communication support needs, that are more appropriate and effective. There is a large variety of available AAC options and devices on the market. For people whom have difficulties direct accessing an AAC device; there is a wide range of indirect access methods. Options include switch scanning, eye gaze and electroencephalogram (EEG) neuro computer interfaces. Within these options again, there is a wide selection, for example head switches, hand switches, joy stick, mouth switches breath switches such as sip puff. All of these indirect access
5 Speech Pathology Australia, (2012), p. 29.
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methods, allow the person with complex communication needs to have autotomy of the messages they can create and therefore communicate. Historically, funding for these best practice communication supports may not have been available or subsidised in Australia under various state, territory and Commonwealth programs. However with the advent of the NDIS, any participant who requires speech related therapies or aids and equipment to support communication, will have this funding available to them. Financial constraints should no longer be a reason for the use of FC over better practice alternatives and assistive technology for life may in the long term provide a more cost effective option compared to ongoing per hour therapy costs. Participants should always be encouraged to use available funding to access supports that work. Further, a recent ‘Review of disability service provision to people who have died while in receipt of disability services 2017-2018’, conducted by Victorian Disability Services Commission highlights how effective communication support via a communication assessment is vital, particularly for people with disability who are at significant risk of health related complications6. Key Recommendations Generally, NDIS planning acknowledges that participant support needs vary and whether a support meets the criteria of reasonable and necessary is always assessed on a case by case basis. A key priority of the NDIA is placing the participant at the centre of all planning considerations. The NDIS acknowledges that people are free to choose to pursue any support or service that they believe provides them with a positive outcome within the scope of reasonable and necessary. Recommendation 1: However, the NDIA cannot reasonably justify NDIS funding being used to purchase FC based on: • the established lack of scientific based evidence to substantiate the efficacy of FC; • apparent absence of endorsement from reputable peak health bodies; • incompatibility with NDIS legislative requirements and General principles; and • the potential risk of harm to a NDIS participant. This position is consistent with that of Speech Pathology Australia and the American Speech and Hearing Association, the peak national bodies and subject matter experts on augmentative and alternative communication supports and therapies for people with complex communication needs. Recommendation 2: Liaise with the NDIS Quality and Safeguarding Commission (the Commission) to ensure that the risks associated with FC are communicated effectively. Recommendation 3: s47C - deliberative processes s47CRecommendation 4:- deliberative processes
6 Victorian Disability Services Commission, (2018), Review of disability service provision to people who have died while in receipt of disability services 2017-2018, ’file:///C:/Users/ADO283/Desktop/DSC Reviewofdisabilityserviceprovisiontopeoplewhohavedied 201718.pdf
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s47C - deliberative processes
Recommendation 5: s47C - deliberative processes
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Full Literature Review – Facilitated Communication
Facilitated communication (FC) is a controversial therapeutic approach. There have been some complaints to the Agency about providers Brief providing this therapy service. The Agency would like to develop a s47Fposition- personal priva on this therapeutics47F - personal priv approach.s47F - personal p (Conference call 24/06/19: Jane Shannon Craig
Date 08/07/19
Prepared for Jane s47F - personal pr (Asst Director TAT Advisory)
Prepared by Craig s47F - personal (Tactical Research Advisor - TAT/AAT)
Contents Overview & Research base for FC ……………………………………………………………………………. 8 NDIA Internal Research to date ……………………………………………………………………………….. 9 Definition of Facilitated Communication (FC) ……………………………………………………………… 9 History of Facilitated Communication (FC) …………………………………………………………………. 9 Targeted Cohorts …………………………………………………………………………………………………… 9 Training & Education of FC Therapists …………………………………………………………………….. 10 Human Rights & Ethics …………………………………………………………………………………………. 10 Legal Implications ………………………………………………………………………………………………… 11 Organisations who have guidelines/position statements opposing FC ………………………….. 11 NDIS Approved Providers offering FC ……………………………………………………………………… 12 Literature Search & Summary ………………………………………………………………………………… 13 Systematic/Peer Reviews …………………………………………………………………………………… 13 Human Rights & Ethics ………………………………………………………………………………………. 15 Legal Implications ……………………………………………………………………………………………… 17 Open source information ……………………………………………………………………………………. 19 Lived Experience ………………………………………………………………………………………………. 21 Position Statements of organisations opposing FC …………………………………………………. 22
Overview & Research base for FC There is a vast amount of literature on the subject. The literature indicates the subject is highly controversial, and that there is an overwhelming lack of evidence to support FC as a technique.
The literature search has been categorised into type of evidence using the Evidence Based Practice, hierarch of evidence, and on the quality of evidence (low, medium or high) based on the hierarchy, and access to the article (abstract or full article).
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NDIA Internal Research to date HPRM search indicates an enquiry was made in 2015 by Fiona s47F - personal privacy (Assistant Director Engagement and Implementation, NDIA) in that NDIA were getting regular queries in Queensland regarding the use of facilitated communication, because Disability Services (Qld) had recently rescinded their previous Complex Communication Needs Policy which endorsed the use of FC, based on recommendations made by Prof Karen Nankervis, Ass Director, Centre of Excellence for Clinical Innovation and Support, Disability Services Qld. In June 2019 writer enquired as to an outcome from Fiona regarding her enquiry, with the feedback: “No outcome that I’m aware of. I’ve had anecdotal feedback from participants/families that planners don’t enable planning or review discussion to include FC - e.g. meeting by phone where FC as preferred comms method can’t be used”. (2015 enquiry HPRN Record: 36016129). Definition of Facilitated Communication (FC) FC, (can also be referred to as “facilitated communication training”, “supported typing” or “hand over hand”) is a technique which attempts to aid communication by people with autism or other communication disabilities. The facilitator holds the disabled person’s arm or hand during this process and attempts to help them move to type on a keyboard or other device. The facilitator may provide emotional, communication and physical supports to enable the person to point reliably to communicate. History of Facilitated Communication (FC) FC can be traced back to the 1960s in Denmark. It became popular and gained traction in Australia during the 1970s, largely due to the efforts of special educator Rosemary Crossley who is currently the director of the Anne McDonald Centre in Melbourne. FC began to emerge internationally in the 1990’s and gained popularity and legitimacy at Syracuse University’s Facilitated Communication Institute (a private research university in Syracuse, New York), after a professor emeritus was exposed to the technique by Rosemary Crossley. In 1994, the American Psychological Association (APA) declared that there was no scientific evidence proving that FC worked, and that it constituted “immediate threats to the individual civil and human rights” of the person being facilitated. One of the primary concerns, both scientific and ethical, was the issue of “authorship”: whether the thoughts being expressed truly arise from the facilitated, and not the facilitator. The APA was soon joined by a range of leading professional and scientific organizations, such as the American Speech-Language-Hearing Association and the American Academy of Pediatrics, and by the late ‘90s, facilitated communication proponents were largely dismissed. Currently in Australia there is a general opposition to FC from various organisations operating to assist people with severe communication disabilities, including The Victorian Advocacy League for Individuals and Disabilities Inc. (VALID) and Speech Pathology Australia, both holding strong positions on the subject, based on there being no scientific evidence of its validity. Targeted Cohorts FC attempts to aid communication by people with autism or other communication disabilities. The Anne McDonald Centre in Melbourne maintains its services are aimed at people “who are unable to talk, or to talk clearly, as a result of conditions such as cerebral palsy, strokes, acquired brain damage, autism, Down syndrome, or intellectual impairment”. The majority of literature available indicates the technique mainly targets people with autism.
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Training & Education of FC Therapists
A search of the Australian Skills Quality Authority (ASQA) database indicated that there were no registered training organisations or registered courses either existing or in development on the subject of FC.
Syracuse University: Institute of Communication & Inclusion, responsible for the international emergence of the technique in the 1990’s has produced training standards for FC and also offers workshops.
The raisingchildren.net.au website, which is funded by DSS Australia, advises that anyone can become a FC facilitator and to contact an NDIA planner, NDIS early childhood partner or NDIS local area coordination partner, if looking to find a facilitator.
The following training organisations were found:
Organisation Details Link Location Empowered Facilitated | 1 day workshops Link to training Sydney, Australia Communication details
Training
Link to website
Syracuse University: 2 day introductory | Link to training Syracuse, NY Institute of workshop details Communication & Inclusion Link to training standards documents TASH 1 day workshop Link to trainin Washington, D.C details
Human Rights & Ethics
There is much addressed in the literature with regard to the human rights and ethics perspective of FC, with organisations who oppose the technique including such in their positions statements. Surrounding this is the controversy of sexual abuse where nonspeaking children and adults purportedly used facilitation to make allegations of sexual abuse against family members, care givers, and others. For example VALID (see statement review below) is concerned that the personal or professional interests of those who are practising or promoting Facilitated Communication might sometimes be in conflict with the rights and interests of the person with a disability. Speech Pathology Australia suggests speech pathologists need to be aware that the act of using FC to ‘facilitate’ a person to point to letters, words, or messages might expose the person with complex communication needs to undue influence, manipulation, and exploitation. The American Psychiatric Association Council of Representatives asserts that specific activities contribute immediate threats to the individual civil and human rights of the person with autism or severe mental retardation. ISAAC Position Statement (see statement review below) suggests the use of FC appears to be in violation of several articles of the United Nations Conventions on the Rights of Persons with Disabilities (i.e., Articles 12, 16, 17, and 21) as it has been shown to prevent individuals without sufficient spoken language from using their own “voice.”
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Legal Implications As with the human rights issues surrounding FC, position statements opposing FC include the legal implications of the technique, and there is much literature and open source articles regarding FC being used as evidence in the legal system and courts. There have been many cases involving accusations using FC particularly of sexual abuse. Organisations who have guidelines/position statements opposing FC Australia • The Victorian Advocacy League for Individuals and Disabilities Inc. (VALID). (Summary in Literature search below) • Speech Pathology Australia. (Summary in Literature search below)
New Zealand • The New Zealand Ministries of Health and Education. (Summary in Literature search below)
United States • The American Psychiatric Association Council of Representatives (APACR) (Summary in Literature search below) • The New York State Department of Health. (Summary in Literature search below) • The American Speech-Language-Hearing Association (ASHA) (Summary in Literature search below) • The American Academy of Child and Adolescent Psychiatry (AACAP) • The American Academy of Pediatrics (AAP) • The American Association on Intellectual and Developmental Disabilities (AAIDD), previously called the American Association on Mental Retardation (AAMR) • The American Psychological Association (APA) Other International • The Association for Behaviour Analysis International (ABAI) • The Association for Science in Autism Treatment • Behaviour Analysis Association of Michigan (BAAM) • The Federal Trade Commission (FTC) • Heilpädagogische Forschung • The Institute on Disability (IOD) at the University of New Hampshire • The University of Northern Iowa • The International Society for Augmentative and Alternative Communication (ISAAC) • National Institute for Health and Care Excellence (NICE) • The Scottish Intercollegiate Guidelines Network
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e Socialstyrelsen (The National Board of Health and Welfare, Sweden)
e Speech-Language & Audiology Canada (SAC)
e The Swedish Autism and Asperger Association NDIS Approved Providers offering FC
A search from the registered provider list from the NDIS website was done on the keyword “communication”. Where available, the providers’ websites were searched for “facilitated communication”. As well, a general internet search was carried out for NDIS providers and various keywords associated with FC. The following were located.
Organisation Service Link | Other Detail Beacon Support Link to
Phone: 1300 435 782 service>
Unit 1B, 199 Gympie Road,
Strathpine Qld 4500
Adam Inc Link to $22(1)(a)(ii) - irrelevant material Email: info@adam.org.au service>
Phone: 0417 572 475
Alice Owen Link to
Speech Pathologist Service>
Phone: 0412 451 514
Email: aliceowencreate2@gmail.com
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Literature Search & Summary
Systematic/Peer Reviews
Author / Provider Title Summary Link | Published’ | attachment ee ; Australian and | Systematic review of A systematic search was undertaken to locate Link | 2018 ror ea US authors: facilitated articles about FC in English published in the peer
- reviewed literature since 2014. Acrobat Document communication 2014— Systematic Review Kristy Logan (La 2018 finds no new Main contribution: In total, 18 studies met the Full article Trobe Uni, Aus) evidence that messages inclusion criteria. There were no new empirical Teresa lacono , delivered using studies and no new descriptive quantitative (La Trobe Uni facilitated studies addressing the authorship of messages Comprehensive review A oy communication are delivered using FC. fompri ° wan us) & David authored by the person giving inclusion criteria Trembath with disability Conclusions reached were that there were no new and with evidence (Menzies Health studies on authorship and there remains no categories according Institute Qld) evidence that FC is a valid form of communication to quantitative, for individuals with severe communication quantitative descriptive disabilities. data on messages There continue to be no studies available ahem oti a “dats re demonstrating that individuals with communication qualitative cata, an I disabilities are the authors of the messages commentary material. generated using FC. Furthermore, there is substantial peer-reviewed literature that is critical of FC and warns against its use. R. Schlosser, etal | Facilitated ISACC, The International Society for Link | 2014 aya | eabadtheaeminea nee Communication and Augmentative and Alternative Communication Acrobet Document Authorship: A formed a Committee on FC and charged this Systematic Review committee to synthesize the evidence base Systematic Review related to this question in order to develop a Abstract position statement. The purpose of this paper is to
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report this synthesis of the extant peer-reviewed literature on the question of authorship in FC. Authors conducted a multi-faceted search including electronic Conclusions reached were that only literature that database searches, met level one criteria was deemed to provide ancestry searches, scientific evidence of authorship of communicative and contacting messages. Three systematic reviews and four selected authors. individual studies met level one criteria and this Evidence is classified literature provided robust evidence that FC is not and four levels of a valid technique. analysis were used.
Mostert, Mark Facilitated Previous reviews of Facilitated Communication Link 2001 s47C - deliberative processes Communication Since (FC) studies have clearly established that 1995: A Review of proponents’ claims are largely unsubstantiated(Journal of Autism Published Studies and that using FC as an intervention for Systematic Reviewand communicatively impaired or non communicativeDevelopmental Abstract/Preview individuals is not recommended. However, whileDisorders) FC is less prominent than in the recent past, investigations of the technique’s efficacy continue. Examines published This review examines published FC studies since studies since the the previous major reviews by Jacobson, Mulick, previous major reviews and Schwartz (1995) and Simpson and Myles on the subject in 1995, (1995a). Findings support the conclusions of updating the subject previous reviews. However, this review critiques research time period. and discounts the claims of two studies purporting to offer empirical evidence of FC efficacy using control procedures.
George H. S. Standards of Proof: Paper prepared by members of TASH, an Link 2015 s47C - deliberative processes Singer, Robert H. TASH, Facilitated “international leader in disability advocacy”. Horner, Glen Communication, and the Reviews recent developments in the controversy Dunlap, Mian Science-Based over facilitated communication (FC) in light of Narrative Review Wang Practices Movement major contextual continuities and changes in the Abstract past two decades. The article asserts that series of scholarly reviews of the literature on controlled experiments have established a preponderance of
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evidence that FC is not reliably an expression from the individual who receives facilitation, and that there is evidence which indicates that the facilitator is the usual source of the text. Discusses the standards of proof of efficacy that must apply before an intervention should be endorsed by a national organization that aims to have a major impact on policy and practices. The
Reviewed scholarly reviews on controlled experiments. Indicates the need for controlled experiments in
University of Queensland, Brisbane, Australian School of Education, University of Queensland, Brisbane, Australia
Communication is an abuse of human rights
Convention on the Rights of Persons with Disabilities (200614. United Nation Convention on the Rights of Persons with Disabilities and Optional Protocol (2006). Geneva, Switzerland. View all references). Gives examples of FC abuse in Australia.
article urges TASH to withdraw its stated evaluation endorsement of FC, which is not supported by interventions is science-based research. discussed. Human Rights & Ethics Published/ Quality of Evidence / Author / Provider Title Summary Reviewed Attachment Research Type Victorian A review of disability On page 20 of this review there is a section on Link | 2018 ta* p , Disability service provision to effective communication support that highlights fa A unbiased. factual Services people who have died the human rights aspect of communication Acrobat Document review based on Commissioner 2017-2018 supports. : human rights legislation Chan, Jeffrey and | Stolen voices: This paper argues against FC from a human Link | 2015 ap a Tc nl Nankervis, Karen | Facilitated rights perspective using the United Nations Acrobat Document
Narrative Review Full article
A comprehensive well cited review on the subject with Australian case content.
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Steven Salzberg Facilitated A general article raising concerns of FC as Link 2018 s47C - deliberative processes Communication Has unethical but also giving general historical Been Called An Abuse information regarding the technique. (Professor of Of Human Rights. Why Editorial Biomedical Is It Still Around?Engineering, Full article Computer Science, and Biostatistics at Johns Hopkins University) Small general article. References are cited.
New York Times The Strange Case of Feature article regarding the criminal trial of Anna Link 2015 s47C - deliberative processes Magazine / By Anna Stubblefield Stubblefield. Article looks at the arrival of FC in Daniel Engber the United States during a hysteria over child sexual abuse, fuelled by memories ‘‘recovered’’ Editorial during hypnosis or elicited from children, Full article indicating that by the end of 1994, some 60 users of facilitated communication had made claims of sexual abuse. Brings focus on the amount of sexual abuse claims using FC.
Sydney Morning Suffering at the hands of Comprehensive article detailing the landmark Link 1992 s47C - deliberative processes Herald the protectors case for the Guardianship and Administration By Paul Heinrichs Board . . . the first time an application has been brought as a result of the issue of facilitated Editorial communication. Full article
No references cited.
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Legal Implications
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Author / Provider Title Summary Link uplished Attachment a ae J Colin Miller Indiana Case Sets the An article from Law Professor Blogs investigating | Link | 2017 po (Univ. of South Standard for Admitting the question of whether a testimony obtained by Carolina School Testimony Obtained Via | facilitated communication be admissible in the of Law) Facilitated legal system, asserting that it lends itself to Editorial Communication empirical rather than scientific proof. It Full artic! investigates where a trial court held that cases un article from other jurisdictions suggest that the reliability General article of facilitated communication should be determined considering the use of on a case-by-case basis. FC in the legal System ABC News Not Just the Wendrows: | This article from ABC News (US) delves into the | Link | 2012 —————— By ALICE Sex Abuse Cases concerns of Suzette Wheaton who was involved in GOMSTYN Dismissed After unfounded sexual abuse allegations by the use of Facilitated FC in the legal system, in the light of another Editorial Communication family involved in similar circumstances. It Eull artic! mentions that at least two families entangled in ul article unfounded sex abuse allegations linked to FC in the 1990s have sued law enforcement authorities . . . as well as Douglas Bilken, the Syracuse Brings into light the University professor who introduced FC to the lack of accredited U.S. The lawsuits were both later dismissed but in training of facilitators 1997, in a separate case, a New York family won of the technique. $750,000 after a jury found Orange County, N.Y., Officials liable for failing to properly train its employees to “use the difficult and unproven technique of facilitated communication,” according to The New York Law Journal. Maryland Journal | Facilitated This article explores the phenomenon of FC, and | Link | 1995 ee of Contemporary | Communication: Can the implications of excluding FC as a means of
Legal Issues,. 6,
participating in the legal system. It traces the
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No. 2, p. 233, Children with Autism introduction and widespread use of FC in the US Editorial 1995 Have a Voice in Court? and examines the clinical debate surrounding FC Abstract along with the legal issues of admissibility under the Frye and Daubert standards. Nancy Maurer General article exploring the debate of FC and its implications in the legal system.
Dave Stafford First impression: Court An article from the Indianan Lawyer website Link 2017 s47C - deliberative processes may consider facilitated regarding the Indiana Court of Appeals allowing a communication disabled minor to testify in a civil trial using FC. Editorial Full article
General article highlighting the debate of the validity of FC used in the legal system.
From Autism Facilitated An article from the Scientific Review of Mental Link 1992 s47C - deliberative processes Research Review Communication: Courts Health Practice which is a peer-reviewed journal International, Vol. say “No” devoted exclusively to scientifically supported 6 no 3, 1992 claims from scientifically unsupported claims in Editorial clinical psychology, psychiatry, social work, and Full article allied disciplines. A review of the first court decisions in the U.S. involving allegations of sexual abuse purportedly A review of a legal made via facilitated communication where two case concerning FC New York judges made independent rulings that giving policy allegations made by FC could not be considered statements from as evidence because the validity of FC has not established health been established. organisations.
Includes policy FC statements of : American
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Academy of Child & Adolescent Psychiatry, American Association on Mental Retardation, and American Psychiatric Association.
Open source information
Social Services
Raisingchildren.n et.au
Australian Government, reviewed by experts and non-commercial, so you know you can trust us’.
Article suggests the enquirer contact their NDIA
planner, NDIS early childhood partner or NDIS local area coordination partner, if they are interested in the technique.
Author / Provider Title Summary Link evened Attachment Quality of Evidence Anne McDonald | Facilitating Website article from the Anne McDonald Centre ‘| Link 2012 Sel Centre Communication, which has been providing people with little or no (Melbourne) Changing Lives functional speech with the tools for self-advocacy
for twenty-five years. One of the tools they have Editorial developed over that time is facilitated Full article communication training. The article offers what the centre refers to as an “academically respectable as well as therapeutically effective” Useful lived bibliography od material relevant to the subject. experience reference from the organisation which introduced FC to Australia in the 70s. Australian Facilitated Website article providing “free, reliable, up-to-date | Link 2017 po Government communication: Therapy | and independent information to help your family Department of at a glance grow and thrive together”. Funded by the
Narrative Full Article
An “at a glance” General overview of the technique only.
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Parliament of Senate Enquiry An inquiry into the prevalence of different types of Link 2014 s47C - deliberative processes Australia Senate Prevalence of different speech, language and communication disorders This senate enquiryEnquiry types of speech, and speech pathology services in Australia. considered over 305 language and submissions from peak communication bodies across disorders and speech Australia. pathology services in Australia - 2014
Research Autism Facilitated General Article from an organisation which is part Link s47C - deliberative processes Communication and of the National Autistic Society in the UK. The Autism organisation gives an opinion on the use of Editorial facilitated communication, suggesting there is Full article high quality evidence indicating that communication is created by the facilitator. Small opinion article pinion only does not cite references.
Wikipedia Facilitated Comprehensive entry in Wikipedia Link s47C - deliberative processes communication
Editorial / Narrative Full article
Well constructed narrative and comprehensively referenced.
Bronwyn Hemsley It’s time to stop General article on FC including history of FC, Link s47C - deliberative processes et al exposing people to the potential harm, communication rights, reasons to dangers of Facilitated not support FC. Communication Editorial/Narrative Professor of Full articleSpeech
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Pathology, University of Technology Sydney
Historical / retrospective article offering cited reference to organisations and literature on the
disability. The author summarizes her positive experience with FC.
subject. Lived Experience Author / Provider Title Summary ees, Attachment aera sence ! Communication Tim Chan 17 year old Tim Chan who is on the autism 2012 N/A Rights Australia spectrum, tells of his positive experience using FC. Crossley, A Personal Account of _| Article by Rosemary Crossley who was 1992 eel Rosemary the Development of responsible for the emergence of FC in Australia Facilitated in the 1970’s. The author details her early Communication Training | attempts at FC with client Anne McDonald. The Narrative author operates the Anne McDonald centre in Abstract/Previ Melbourne. Anne McDonald and her experience stracurreview with FC is the subject of the author’s book Annie’s Coming Out (1980), and the movie of the same Historical information i - name produced in 1984 from the founder of FC in Australia with well cited references. Blackman, Lucy Lucy Blackman Short article by the author who has an intellectual ink | 2011 N/A
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Wurzburg, Wretches and Jabberers | This documentary is about five adults who now | Link | 2014 N/A Gerardine (Documentary Film) converse readily and who all started to (Director) communicate by using keyboards with hand support (FC), which took many years to achieve their current skills. Position Statements of organisations opposing FC . , Published/ Quality of Evidence / Author / Provider Title Summary Link Reviewed Attachment => Type Speech Clinical Guideline: This position statement from a national peak body | Link | 2012 ae aa Pathology Augmentative and for the speech pathology profession in Australia J Australia Alternative asserts that to date, there is no substantive Acrobat Documen Communication (2012) evidence to support theory argued to underpin FC Position Statement that the people who use the method have an Full article underlying movement disorder that warrants facilitation . . .FC remains an approach with little supportive evidence and a preponderance of Position of an evidence that contraindicates its use, and its use established is not recommended. professional peak body organisation with well cited reference to peer reviewed literature. VALID (Australian | Position Statement on This organisation has been advocating for people | Link | Te advocacy group the Use of Facilitated with a disability in Victoria, Australia since 1989, Acrobat Document for people with Communication and believes they have a responsibility to publicly intellectual explain their concerns regarding FC, and they ask Position Statement Disability) that people examine the evidence. VALID asserts Full article
the anyone considering the use of Facilitated Communication should examine the extensive independent evidence. Family members and
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supporters of people using Facilitated Position of an Communication should seek independent established advocacy assessment, advice and advocacy. The Victorian organisation based on Government, through DHS, must develop a set of an awareness of an firm and clear policy guidelines to protect people extensive body of with a disability from potential exploitation and independent and peer- abuse through Facilitated Communication and reviewed research. other unreliable and un-validated practices. (Web: https://www.valid.org.au/)
The ISAAC Position Formed in 1983 this organisation exists to create Link 2014 s47C - deliberative processes International Statement on Facilitated worldwide awareness around how Augmentative Acrobat Document Society for Communication and Alternative Communication can help individuals without speech. ISAAC does not Position StatementAugmentative support FC as a valid form of AAC, a valid meansand Alternative Full article for people to access AAC, or a valid means toCommunication communicate important life decisions. The weight (ISAAC) of evidence does not support FC and therefore it Well researched and cannot be recommended for use in clinical cited document from practice. an established This position statement is consistent with the organisation with position statements of the following reputable specific goals related organizations: to the subject. American Academy of Pediatrics (AAP, 1998), American Academy of Child and Adolescent Psychiatry (AACAP, 1993), American Association of Mental Retardation (AAMR, 1995), American Psychiatric Association Council of Representatives (APACR, 1994), American Psychological Association (APA, 1994), American Speech-Language and Hearing Association (ASHA, 1995), Association for Behavior Analysis (ABA, 2005), Association for Science in Autism Treatment, Autism & Asperger Förbundet (2012), Behavior Analysis Association of Michigan (BAAM, 1998), New Zealand Ministries of Health
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and Education (2008), Scottish Intercollegiate Guidelines Network (2007), Speech Pathology Australia (2012), Socialstyrelsen (The National Board of Health and Welfare, Sweden, 2014), Victorian Advocacy League for Individuals with Disabilities Inc (VALID, 2012), and Heilpaedagogische Forschung (2003).
The New Zealand New Zealand Autism Evidence Based Practice Guidelines: Autism 2008 s47C - deliberative processes Ministries of Spectrum Disorder Spectrum Disorder document from the ministry. Acrobat Document Health and Guidelines The summary of recommendations 4.5.2 asserts Government Education that he use of Facilitated Communication for ASD- Recommendation specific symptoms in children with ASD is not recommended. Full Article
Well researched and cited government recommendation.
The New York Report of the The “Early Intervention Program Memoranda, Link 2017 s47C - deliberative processes State Department Recommendations - Guidance and Clinical Practice Guidelines” for the of Health Autism / Pervasive department assert that because of the lack of Developmental evidence for efficacy and possible harms of using Government Disorders facilitated communication, it is strongly Recommendation recommended that facilitated communication not be used as an intervention method in young children with autism. Full article
Well researched and cited government recommendation within the last 12 months.
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The American Council Policy Manual: Position statement of the APA which resolves that Link s47C - deliberative processes Psychiatric Chapter XI. Scientific the APA adopt the position that facilitated Association Affairs communication is a controversial and unproved Narrative ReviewCouncil of communicative procedure with no scientifically Representatives demonstrated support for its efficacy. Full article
Position statement of a large, established organisation, with references attached to their position.
The American Position Statement The position of the American Speech-Language- Link s47C - deliberative processes Speech- Hearing Association (ASHA) is that Facilitated Language- Communication (FC) is a discredited technique Hearing that should not be used. There is no scientific Editorial Association evidence of the validity of FC, and there is Full Article (ASHA) extensive scientific evidence—produced over several decades and across several countries— Position statement of a that messages are authored by the “facilitator” large, established rather than the person with a disability. disabilities Furthermore, there is extensive evidence of harms organisation. related to the use of FC. Information obtained through the use of FC should not be considered as the communication of the person with a disability.
Barb Trader Resulting from many members of the TASH Link 2016 s47C - deliberative processes organisation opposing FC and having concernsExecutive about TASH’s endorsement of the technique,Director, TASH TASH produced a letter of response from Editorial regarding its stance on the validity of FC. TASH Full article concludes it currently has no official position on FC, although they indicate they are firm in the belief that people have the right to communicate Position statement of a in the way they find most effective. large, established organisation
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(TASH is an international disability advocacy founded in 1975. TASH advocates for human rights and inclusion for people with significant disabilities and support needs — those most vulnerable to segregation, abuse, neglect and institutionalization).
advocating for human rights and people with disabilities.
Position Paper drafted by:
Aanika™ “”
Senior Research Officer — Research Team Technical Advisory Team
National Disability Insurance Agency Phone S75 Personal privacy
Email aanikal ~~ @ndis.gov.au
Literature review conducted by: Craig™ “™ Tactical Research Advisor
Technical Advisory Team - Administrative Appeals Tribunal
National Disability Insurance Agency Phone: S47F - personal privacy
Email Craig’ “~ @ndis.gov.au
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