Submission 151 — Communication Rights Australia — Select Committee on Autism | External submission

Submission to
Senate Select Committee on Autism

Inquiry into the services, support and life outcomes for autistic people in Australia
and the associated need for a National Autism Strategy

Communication Rights
Australia

Inquiries to:
Monique Sweetland/Julie Phillips
Communication Rights Australia

Web: www.communicationrights.com.au

16 July 2020

Introduction

People with communication support needs are some of the most marginalised and vulnerable within our community. If you cannot tell others what you need or want, or cannot speak up for your rights, then you are open to abuse, neglect, isolation, and disempowerment.

Communication Rights Australia (‘Communication Rights’) was established in 1980 as a human rights information and advocacy organisation prioritising people who have little or no speech. It began as a self-help group by people in the speech-impaired community and evolved into a funded advocacy organisation in 1999.

Since its inception over four decades ago, Communication Rights has provided specialist information and advocacy support to people with severe communication difficulties caused by a range of conditions including Autism Spectrum Disorder (ASD), Acquired Brain Injury, Cerebral Palsy, Motor Neurone Disease and stroke.

In 2019, due to altered funding arrangements largely associated with the rollout of the NDIS, Communication Rights was left with insufficient funding to continue providing a quality advocacy service and consequently had to make the extremely difficult decision to cease providing services.

As with the rest of the disability advocacy sector, Communication Rights had some prior notice that information funding would be withdrawn, and had been applying for grants. However, due to the broad range of organisations now eligible to apply for those grants - now national grants rather than state and open to those outside the disability sector - to date we have been unsuccessful in this endeavour.

Communication Rights has had a proud history of working effectively with people with disability who have high communication support needs. Our commitment to providing this advocacy is unwavering, and we are deeply disappointed to find ourselves in the position of having insufficient funding to continue this critical service. While we are not currently providing advocacy services to individuals, the organisation continues to exist and its Board is committed to continuing to explore options to enable the organisation to recommence advocacy provision in the near future.

Executive summary

Communication Rights‘ submission focusses on the unmet support needs of many people with ASD, that often result in mistreatment and discrimination. We are committed to pursuing and advocating for better access to communication systems and supports, and to ensure that the rights of people with ASD, to be heard and to be involved in decision making, are upheld. The adverse treatment of people with ASD has been demonstrated and evidenced repeatedly over the years, through innumerable reports and inquiries. Key findings include:

that people with ASD are subjected to abuse and violence, including through the use of physical and chemical restraints, at an alarmingly high rate
that people with ASD are overrepresented in numbers of people absconding, and resultant harm, due often to being misunderstood and/or feeling frustrated about unmet or urgent needs arising from an inability to communicate such needs.
that people with ASD and complex communication needs are too frequently found to not have any communication systems or plans in place
that people with ASD and complex communication needs who do have access to communication supports/devices, are nevertheless frequently being restricted from using those systems/devices

To address these critical issues, our key recommendations are:

that advocacy services designed specifically for people with communication support needs, such as Communication Rights, are sufficiently funded to represent them at their request;
that children and young people with ASD who are displaying behaviours of concern are able to receive evidence-based intensive behavioural support, in place of the use of restrictive practices; and

that people with communication support needs be given access to interventions and supports, including through any form of Augmentative or Alternative Communication (AAC) that is necessary and suitable for them, to enable them to communicate and be involved in decision making and social interactions - this must be enshrined in legislation, and its implementation by relevant bodies enforced.

Each of these recommendations is explored further in the following three sections.

1. The need for advocacy services specifically for people with ASD

Calls for advocacy funding to be increased - specifically funding for individual advocacy - have been made for years, as the following quotes and extracts attest:

“A safer system for people with disability also requires that every voice can be heard. While many people with disability can speak out for themselves when their care is unsatisfactory, and should be encouraged to do so, those who cannot are especially vulnerable. Victoria therefore requires a robust system of advocacy to ensure that those who need support to speak up when something is not right are able to access that support.” (Executive Summary, point 18, p9, Vic Ombudsman, Reporting and Investigation of Allegations of Abuse in the Disability Sector, Phase 1 - the Effectiveness of Statutory Oversight, June 2015)
“The Department funds 24 advocacy services to assist people with disability in Victoria. However, the funding provided is extremely limited with only around 30 per cent going to individual advocacy. As a result many of these services do not have the resources to provide individual services to people with disability but instead focus on systemic advocacy.” (p86 point 526, Vic Ombudsman, Reporting and Investigation of Allegations of Abuse in the Disability Sector, Phase 1 - The Effectiveness of Statutory Oversight, June 2015)
“The role of advocacy is particularly important in the highly sensitive area of complaints about abuse, where people may be afraid to complain, and for

those people who do not have the ability to communicate or make a complaint on their own behalf.” (p86 (point 524), Vic Ombudsman, Reporting and Investigation of Allegations of Abuse in the Disability Sector, Phase 1 - The Effectiveness of Statutory Oversight, June 2015)

“The NDIS is a market driven model, rooted in the belief that people with disability are best placed to decide how their money should be spent on services to support them. For many people with disability, this is a long awaited improvement, however for people with severe cognitive impairment and/or limited communication, it can present new barriers. For the most vulnerable, capacity will never improve; it is not a developmental challenge that will be rectified as people ‘become more confident and skilled consumers in the market’. This fact must be acknowledged and provided for within the NDIS. Without a strategy to embed the role of advocacy, a market-based model appears inaccessible for a large sector of people with diminished capacity to make informed decisions. It is not viable for advocacy to take a secondary position in the safeguards framework. I consider advocacy to be key in a framework for Victorian people with disability who have no prospect of becoming empowered consumers and have no family or friends to voice their best interests. (p90 (paras 560-562), Vic Ombudsman, Reporting and Investigation of Allegations of Abuse in the Disability Sector, Phase 1 - The Effectiveness of Statutory Oversight, June 2015)
Noting that of the $4.8 million provided for advocacy, only $1.59 million is allocated to supporting individuals, “the Ombudsman recommended that the funding for advocacy should be increased” (section 3.4 p62, FCDC Inquiry into Abuse in Disability Services, Interim Report, Aug 2015).
“The committee recommends the National Disability Advocacy Program implement the following recommendations: …. a review to ensure delivered advocacy is appropriately spread across service types and complaint types, to ensure the most vulnerable are receiving advocacy; … ensure that current model of funding peak bodies does not inadvertently result in the closure of smaller specialist or local advocacy organisations” (para 10.53, Commonwealth Senate Community Affairs Reference Committee, Report into Violence, Abuse and Neglect Against People with Disability, Nov 2015,

Recommendation 16)

We reiterate these concerns and calls, and emphasise the need for urgent provision of adequate, sustainable and ongoing funding of specialist advocacy services catering specifically to people with communication support needs, such as those with autism.

2. The right to evidence-based intensive behavioural support, in place of the use of restrictive practices

The use of violence against children and adults with ASD is alarming. The violence begins in education, and is usually excused on the basis of responding to behaviours of concern. The cause of those behaviours of concern include but are not limited to the ability to communicate, discussed more below¹. However, apart from an unwillingness to allocate funding to address this serious issue, there is no acceptable reason why behaviours of concern cannot be responded to in sophisticated nonviolent manner. It is particularly concerning that special schools are where many brutal actions against students occur². That is not to say that abuse does not happen in mainstream schools, however special schools have often established purpose-built areas for seclusion, train staff in martial arts and use aversive practices.

Again, the findings in relation to the abuse of students with disabilities in schools have been set out numerous times, in numerous reports and inquiries. The 2015 Senate Community Affairs References Committee inquiry into violence abuse, neglect and exploitation states it clearly at paragraph 4.100-4.142 of its Report³.

Anecdotally, it is clear that the majority of children in schools being subjected to violence by staff have ASD.

Since the Senate Committee’s Report, little has changed. It is clear there is no appetite for change. As the treatment of people when they are young often sets the scene for the entirety of their life, we believe this environment to be a priority area for action. The Federal Government is a considerable donor to state schools. It is unclear as to why such funding should not be tied to key performance indicators in relation to the use of violence against students with disabilities.

People with disabilities have the right to evidence-based behaviour support by qualified experts.

3. The need for access to communication interventions and communication supports

Calls for access to communication assessments and supports have also been made for years, as the following quotes and extracts attest:

In its submission to the Victorian Equal Opportunity and Human Rights Commission’s 2012 inquiry into the experience of students with disability, Speech Pathology Australia noted that in regard to communication disabilities: “Professional staff in the classroom can form the view that if the student is inarticulate, the underlying problem is an intellectual disability. This is not the case as these children are cognitively intact but have a severe language impairment.” (p43, VEOHRC, Held Back: The Experiences of Students with Disabilities in Victorian Schools, September 2012). Speech Pathology Australia also reported that “it had repeatedly expressed concern to the DEECD [Department of Education and Early Childhood Development] that access to speech pathology services in the Victorian school system is at the discretion of the school principal, resulting in ‘significant inequity’ in service provision across the state. They also submitted that the absence of specific guidelines and role descriptions for student support officers leads to individual therapists having to advocate for services for students to school principals, where speech pathology services are either not available or funds

are used elsewhere, for example for an integration aide.” (p62 Part 2, VEOHRC, Held Back: The Experiences of Students with Disabilities in Victorian Schools, September 2012)

“Parents, students, educators and professional organisations all reported challenges in securing assistive technology.” (p65 Part 2, VEOHRC, Held Back: The Experiences of Students with Disabilities in Victorian Schools, September 2012)
In recognition of the justice system’s failure to cater for people with communication disabilities, VEOHRC made the following recommendation in its 2014 report: “Establish a centralised booking system for Augmentative and Alternative Communication for use by Victoria Police, Office of Public Prosecutions, Victorian Legal Aid, Victorian Courts and tribunals, Victims Support Agency and other justice agencies.” (Recommendation 7, p14, VEOHRC, Beyond Doubt: The experiences of people with disabilities reporting crime - Summary report, July 2014)
VEOHRC also recommended: “Consistent with the Charter of Human Rights and Responsibilities, and recognising that a lack of communication supports may lead to the unnecessary use of restrictive interventions, the Department of Human Services and Department of Health should ensure all service users who require a communication assessment and plan have one, and that this is implemented and monitored. To achieve this, the Victorian Government should ensure that this is resourced and priority should be given in the first instance to people subject to restrictive interventions.” (p58, VEOHRC, Beyond Doubt: The experiences of people with disabilities reporting crime - Summary report, July 2014)

The gaps identified above, many from several years ago, continue to exist. As part of developing the free online resource, the Teachers’ Toolkit for Students with Little or No Speech (Communication Rights, 2018, www.studentswithnospeech.org.au), Communication Rights undertook extensive research to identify the supports in place as at 2018 for students with communication support needs, a large proportion being those with ASD. It is clear from this research that issues of access to a means to communicate for these students continues to be one of the biggest

challenges to their inclusion and achievement in their education. This clearly has serious and lifelong implications for these students’ future social and economic participation in their communities.

In the education sector, the three main issues with access to appropriate communication interventions and supports are:

students being denied funding to have communication assessments undertaken by appropriately qualified speech therapists,
even where appropriate communication systems are available for particular students, schools are not provided with the necessary and adequate information, training or resources to enable all relevant teachers and staff to be knowledgeable and competent in using AAC and communication devices, in order that they can effectively utilise them with the student, and
assessments of students’ educational and cognitive abilities being conducted using tests not appropriate for students with communication support needs, despite the existence - and endorsement by the Department of Education - of alternative tests (such as the Wechsler Nonverbal Scale of Ability (WNV), the Universal Nonverbal Intelligence Test Second Edition (UNIT-2), and the Comprehensive Test of Nonverbal Intelligence Second Edition (CTONI-2))⁴. This can lead to the implementation of inappropriate educational, behavioural and other management plans, because the plans are developed based on inaccurate or flawed results.

These same issues apply to people with ASD and communication support needs outside the education sector, including those living in disability supported accommodation and those participating in day programs.

Access to appropriate communication systems and related supports is critical to enable people with autism who have high communication support needs to be able to exercise their rights to participate in society. Without

⁴ For more see https://www.studentswithnospeech.org.au/toolkit-topics/student-profile/#148-2

such access, their voices cannot be heard, their concerns cannot be addressed, their wishes cannot be pursued.

There are several steps involved in ensuring this access, namely:

timely communication assessments being conducted by allied health and communication professionals with the prerequisite skills and expertise in AAC and non-speech communication,
funding for the actual systems/devices (as well as repairs and replacements as needed),
ongoing resources to train teachers, support workers and other significant communication partners, and
enforceable requirements on schools, disability accommodation service providers, disability day programs and other programs working with people who rely on communication devices, to provide comprehensive and continuous support to utilise the communication devices.

Our recommendation is that all of these steps are urgently implemented with sufficient funding.

Conclusion

Autistic people with high communication support needs are some of the most marginalised and vulnerable within our community. Without guaranteed access to:

communication supports/systems/devices (properly identified and implemented),
intensive evidence-based behavioural support, and
specialised advocacy to ensure their needs, concerns and wishes can be heard the educational, economic and social outcomes for autistic people with communication support needs are severely limited. This would represent a failure of our community to ensure equal opportunity for participation in the educational, social and economic spheres of life.

Our recommendations are supported by the Convention on the Rights of Persons with Disability, specifically:

Article 5 the right to equality and nondiscrimination
Article 9 the right to access all facilities and services
Article 15 freedom from cruel, inhuman or degrading treatment
Article 16 freedom from violence and abuse
Article 21 freedom of expression and opinion (including the right to augmentative and alternative communication)
Article 24 the right to education
Article 26 the right to habilitation and rehabilitation
Article 28 the right to adequate standard of living and social protection

Communication Rights Australia has a proud history of working effectively with people who have high communication support needs. We are deeply concerned that the current disability funding landscape has left those with high communication support needs, including many autistic people, with no specialised advocacy service, as we know how desperately this is needed. We are not aware of any other advocacy organisation in Australia that focuses primarily on people with little or no speech. We urgently call for the reinstatement of adequate funding so such a service can be made available once again.