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, , Anne M c Donald Centre A new deal for people with little or no speech U
THE RIGHT TO COMMUNICATE
In broad terms, around two hundred thousand Australiansi have little or no functional speech. Every one of them requires an alternative means of communication. Very, very few of them have been given one. There are few torments keener than being unable to communicate, particularly if those around you treat you as if you were a baby, whatever your age. There can be few greater abuses than to deny a person the opportunity to find a means of communication. And, of course, people who cannot communicate are of much greater risk of all other abuses, simply because they cannot complain. Communication in “all forms of communication of their choice” is a human right, as recognised by the UN_ ii The Anne McDonald Centre works to make that right a reality.
The Anne McDonald Centre
The Anne McDonald Centreiii was established in 1985 as DEAL Communication Centre with federal and state government funding as the first centre in Australia dedicated solely to helping people with little or no speech_iv From its beginning the Centre has had no restrictions on attendance. Its therapists saw ( and still see) anybody with little or no functional speech, regardless of age, diagnosis, or ability to pay. The Centre is still the only non-speech communication centre in Australia that provides communication assessment, therapy, and equipment to people who have neither government nor private funding. Since 1986 the Centre has provided hands-on therapy to some 4,000 people with little or no functional speech, and has provided the majority of its clients with a functional means of communication. People diagnosed as being in a persistent vegetative state have been helped to speak: people who were previously thought to be intellectually impaired have been assisted to acquire university degrees. In addition to direct client work, the Centre provides phone, email, and Skype/Zoom consultations and disseminates information about communication strategies ( of all kinds) through national and international conference presentations, workshops, journal articles, and books.
The Development of Communication Training Methods: Early days
Most of the people brought to DEAL in the 1980s had been thought to have severe cognitive impairments and had received little or no therapy. Their diagnoses included Autism, Down syndrome, Cerebral Palsy, Acquired Brain Damage, and Stroke. Most had very poor hand skillsv ._ While some communication aids had been devised for people who could not use their hands, those aids were not easily portable and so were suitable only for people using wheelchairs with trays. As the majority of the Centre’s clients could walk, staff had to look for other solutions.
Anne McDonald Centre Inc. 538 Dandenong Road, Caulfield 3162
Phone 03 9509 6324 Email admin@annemcdonaldcentre.org.au
ABN 68 933 715 362
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The DEAL team, consisting at the time of speech therapists, a teacher, an occupational therapist, a physiotherapist, a computer programmer and a technician, developed or obtained a wide range of Alternative and Augmentative Communication (AAC) equipment and strategies, which changed as technology developed. To help ambulant clients who generally had not been offered communication aids previously, DEAL therapists devised a training program to develop the hand skills and literacy needed to use smaller communication aids effectively. In 1987 this therapy program was given the name of Facilitated Communication Training (FCT). It was modified as necessary to suit the needs of individual clients (including those with Down syndrome and autism) who were then provided with exercises to complete at home or in their schools or day programs. The emphasis was always on developing as much independence as was possible. For example, people with tremor who needed support to use a keyboard were taught to point to widely spaced targets without support so they could answer yes/no and multiple-choice questions to confirm or reject any communication generated with support. DEAL paid a technician to manufacture some of the first portable speaking devices in the world
- small boxes that said just ‘YES’ and ‘NO’, or that could speak eight important utterances such as ‘I’m hungry’, ‘I need the toilet’, or ‘Give me a hug’ - for people who couldn’t spell. When the training program enabled many people who had previously been diagnosed as cognitively impaired to reveal unexpected understanding and to develop literacy skills, our programs became controversial.
Early Problems
The provision of communication to people who had never previously communicated, and who had not learnt the social ‘rules’ for conversation, was not without challenges. While providing communication to children presented few difficulties apart from homework refusal and occasional swearing, giving adults communication for the first time was often quite problematical. Parents, who had come to accept that their adult children could never ask for anything, or complain, discovered that they wanted to do what their speaking siblings were doing, and might not like the clothes or food that had been chosen for them. Much was revealed that would not otherwise have been known.
‘Pat’, a teenager with very severe cerebral palsy, used a head-pointer to type and ask his therapist to tell his mother he hated vegemite. (His mother turned out to be substituting vegemite for chocolate- to give him more vitamins!) Later ‘Pat’ used his head-pointer to prevent life-threatening surgery. He was suffering severe pain and his doctors decided that this was due to hip pain and planned to amputate ‘Pat’ typed to tell his mother and doctors the pain was not from his hip, but his stomach. This was treated successfully with ulcer medication, and unnecessary surgery avoided.
Some adults also made serious complaints, which were not always well-founded. One young woman, for example, accused her father of assault. During an investigation by the Victorian Office of the Public Advocate (OPA) it appeared that the allegation may have been motivated by her anger at her very protective family’s refusal to allow her to go on a trip to Queensland with her day centre friends. She’d first had access to communication a year or so previously, in her 20’s, and had no appreciation of the consequences of making up stories. Unfortunately the media became involved, and it was suggested that her day centre staff had manufactured the allegation. (In cases like these there is a tendency to conclude that the communication method is inaccurate rather than that the person with the disability may have said something that wasn’t correct, or may have been misunderstood.)
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The day centre’s Committee ofManagement responded by shutting down the excellent communication program their staff had been running, collecting all the clients’ communication aids (regardless of whether they used them independently or still needed support) and locking them in a cupboard, where they were found many years later after a change of management, and sold on the internet. The clients were offered no alternative forms ofcommunication. Once their aids were locked away, they could no longer complain_vi Experience in dealing with allegations of abuse using AAC has improved practices significantly since the early 1990s. Every effort has been made - by agencies providing communication aids and by AGO SCI, the national professional and user association for non-speech communication to inform the legal system and the police about the special needs of people with little or no speech, and strategies for using communication aids in interviews and courts. Staff from the Anne McDonald Centre are regularly called on for assistance by the Victorian police when a person without functional speech is involved in a case, and we have also provided uncontested expert evidence in court proceedings.vii The Centre first issued its own Best Practice Guidelines for communication partners in 1992, and updated versions are always available (attached). No Centre client, or their family, has ever made any complaint against the Centre or its staff associated with allegations of abuse. The only direct complaints ever received have concerned Centre waiting times or lack of air conditioning.
The Continuing Work of the Anne McDonald Centre
Twenty-five years on from the Centre’s foundation, modem technology made our task easier. The launch of the iPad in 2010, along with other tablets and smart phones, has improved the pointing, the eye-hand co-ordination, and the literacy of many students who would previously have been candidates for facilitated communication training. This improvement is particularly marked in clients with autism, who now make up more than half of our current clients. While using tablets does not remove the need for hands-on therapy to teach new motor patterns, it does mean that most new clients can use apps that enable them to demonstrate their spelling, math and learning skills independently and without support. These improved motor skills also allow them to undertake standardised cognitive assessments that do not require speech. The Centre now works with between 150 and 200 individuals with little or no speech each year, despite having its staff significantly reduced following government cutbacks in disability funding. For a small agency it has had a large impact. The Anne McDonald Centre has had a significant role in setting up communication programs overseas - in China (funded by the Department ofForeign Affairs), in Indonesia and Malaysia (funded by local special schools), and in Italy, England, Germany, the US, Denmark and Finland (funded by government agencies or universities). The Centre also has a strong record of publications and national and international conference presentations, including keynotes and workshops, dating from 1988 to 2019. We took the lead in working with nursing-home residents in the 1990s, conducting a research program that resulted in the writing and publication of a federally-funded booklet containing information about non speech communication together with reproducible communication boards that was provided to every nursing home in Australia (Getting the Words Out, 1998).
Most ofthe Centre’s 48 national presentations have been at the biennial conferences on non speech communication (AAC) held by the national professional body, AGOSCI. At the 2019 AGO SCI conference in Perth, for example, Centre staff delivered four presentationsviii. Many of the Centre’s 111 international presentations have been delivered at the biennial conferences ofISAAC, the International Society for AAC. In 2018, when the ISAAC
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conference was held in Australia for the first time, three Centre clients delivered presentations and Centre staff delivered three more. The Centre had three presentations accepted for ISAAC 2020, to be held in Mexico, but of course it was cancelled. The Centre’s most important contribution, however, has been its challenge to the common assumptions about children with severe speech impairments and their educational needs. Even today, it is often assumed that their communication difficulties reflect severe cognitive impairments. The Centre’s work with people with little or no functional speech has demonstrated that when given a means of communication, many children who have never spoken can undertake the regular school syllabus and complete secondary school. Some go on to graduate from university. Several of the Centre’s studentsix have published books about their expenences. The Centre’s most recent research has established that a high proportion of students with little or no functional speech in segregated schools for children with cognitive impairments are there because their intelligence has been mis-assessed using tests that required spoken answers and unimpaired fine motor skills. In 2016-18 Centre staff administered the Peabody Picture Vocabulary Test (PPVT IV)- a standard and internationally recognised cognitive assessment that does not require speech or fine motor skills - to all school-age clients with a diagnosis of autism who were able to point independently to choose from four pictures to answer the questions, whose parents gave consent. All scored in the average range or abovex_ Since then the Centre has worked successfully with the Victorian Department of Education and Training to introduce non-speech-based assessments into the Department’s Guidelines. The Centre in 2019 - 20 In 2019 the Centre purchased software that allowed staff to program activities on iPad or Android tablets that allow people with minimal hand skills to undertake literacy and math activities and quizzes independently. The clients love the activities, which enable them to demonstrate their skills by answering Yes/No questions such as “Is Melbourne the capital of Australia?” or choosing between two words to complete a sentence. Anyone can download these activities for free once they install a free app in their tablet. The Centre has been working on a cheap eye-gaze system for trial by clients who cannot use their hands. A special camera monitors the client’s eye movements, as the client looks at desired targets, to speak, play games and control the computer. Commercial eye-gaze systems using ‘disability-targeted’ hardware and software cost from $16,000 to $20,000. Even renting one for 3 months trial costs $5,000+. We believe we can assemble a functional system, including a state-of-the art camera and communication software, for approximately $2,000. If this is successful, it will vastly extend eye-gaze access, reduce NDIS costs, and avoid the current lengthy waiting lists. (This is not a commercially-oriented operation: once the system is fully operational, a ‘recipe book’ will be released to enable people - families, therapists, or teachers - with basic computer skills to assemble their own.)
Since the advent of the NDIS, Support Coordinators have asked us to see many people with little or no speech who have all their lives slipped under the radar and have never been offered AAC, or whose impairments are so severe that other therapists refuse to see them. The need for a universal approach to communication for people with little or no functional speech has become increasingly evident. The Anne McDonald Centre continues to provide services to anyone who seeks its help. If they are not entitled to NDIS funding, we will see them for nothing, or for a tax-deductible donation
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‘Mary’ is in her early 20’s, and has a diagnosis of autism. When first seen ‘Mary’ had not left her family
home and was said to be a ora hobic. She had almost no functional s eech, and had ■■■■■I
received no education Her mother, who has mental health issues, . Mary lives more than an hour from the Centre, but obviously she couldn’t be expected to attend. Centre staff have visited ‘Mary’ once a fortnight After the first visit they told her parents that unless the obvious OH&S issues were addressed no support workers or therapists would be able to work with ‘Mary.’ Soon afterwards ‘Mary’s’ room received a much-needed makeover, fresh paint applied, and new furnishings obtained. The Centre lent ‘Mary’ an iPad loaded with communication and therapeutic apps. She enjoyed using this, and showed and developed unexpected skills, including literacy. Unsurprisingly, she used a communication app to say she wants to speak (sadly, unlikely). Her redecorated room had a times-tables chart on the wall and she became a whiz at mental arithmetic.
‘Mary’ is using an iPad Pro with specialised communication apps to make her opinions known, send emails and post to new friends, with and without speech, on her new Facebook page. She’s started leaving the house and prior to the Covid lockdowns had started going to the local coffee shop and buying takeaway- There’s much more to do, but a journey of a thousand miles starts with one step.
It should be a fundamental principle of disability rights that everybody with little or no speech should (unless they already have an empowering communication system) be offered a multi disciplinary communication assessment by an experienced team. The aim of such an assessment should be to ensure that each person is provided with an appropriate communication system and also with training for them and their communication partners. The Centre’s goal is, as ever, for all our clients to communicate and have happier and more fulfilling lives, regardless of their skills or academic achievements. We hope that the Commission will hear some of them tell their stories.