Submission 80
Safeguarding the rights and interests of people with disability
Federal Parliamentary Select
Committee Inquiry into Autism
Services, Support and Life
Outcomes
July 2020
Dr Colleen Pearce AM
Public Advocate
Office of the Public Advocate
Dr John Chesterman
Deputy Public Advocate
Office of the Public Advocate Level 1, 204 Lygon Street, Carlton, Victoria, 3053
Abbreviations
ASD Autism Spectrum Disorder
CISO Corrections Independent Support Officers
Convention United Nations Convention on the Rights of Persons with Disabilities
DHHS Department of Health and Human Services
ECSN Exceptionally Complex Support Needs
nquiry Federal Parliamentary Select Committee Inquiry into Autism
Services, Support and Life Outcomes
TP ndependent Third Person
NDIA National Disability Insurance Agency
NDIS National Disability Insurance Scheme
OPA Office of the Public Advocate
STO Supervised Treatment Order
VCAT Victorian Civil and Administrative Tribunal
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Recommendations
Recommendation 1
The Australian Government should provide free access to registered health practitioners with the expertise to diagnose Autism Spectrum Disorder to enable an early diagnosis within a reasonable time to facilitate early intervention strategies as soon as practicable.
Recommendation 2
Australian jurisdictions should provide funding for developmental screening for Autism Spectrum Disorder in a variety of settings such as schools, health services and prisons. The person with Autism Spectrum Disorder should then be provided the disability support they need regardless of the setting.
Recommendation 3
Federal and State Health Ministers should develop and implement urgently a legislated safeguarding framework to oversee the use of restrictive practices by health practitioners in hospital settings.
Recommendation 4
The Australian Health Practitioner Regulation Agency should ensure that ongoing professional development opportunities are available on the lawful use of restrictive practices. In Victoria, this would include compliance with the Charter of Human Rights and Responsibilities Act 2006 (Vic).
Recommendation 5
Each hospital network should consider having at least one autism spectrum disorder specialist available to consult with and educate other doctors about best practice approaches to patient management that address adequately the disability support needs of people with Autism Spectrum Disorder.
Recommendation 6 The Australian Practitioners Health Authority should ensure that mental health practitioners undertake professional education about Autism Spectrum Disorder and its interaction with mental illnesses, especially anxiety and depression.
Recommendation 7
Australian jurisdictions should legislate and establish Independent Third Persons (ITP) Programs. The legislative provisions should include:
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a requirement for an ITP to be present when interviewing a person with an apparent cognitive impairment or mental illness: o irrespective of age o whether they are an alleged offender, victim, or witness
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a penalty to be imposed when the requirement for an ITP is not complied with – e.g. evidence from an interview may be inadmissible if the procedure was not compliant with the ITP requirement
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a requirement for the ITP program to be adequately resourced to meet its legislated functions, based on modelling of demand.
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Recommendation 8
The Victorian Government should resource adequately the Independent Third Person Program (ITP) to respond to demand.
Recommendation 9
The Victorian Government should expand the role of the Independent Third Person Program (ITP) to provide:
- support in hearings in courts and tribunals
- referrals to service and support agencies. Recommendation 10
The Commonwealth and Victorian Governments should abide by the “Principles to Determine the Responsibilities of the NDIS and Other Service Systems” appended to Schedule E of the bilateral agreement on the National Disability Insurance Scheme (NDIS), with specific reference to the principles applying to the criminal justice system.
Recommendation 11
Australian jurisdictions should consider whether legislation enabling treatment-based detention should be enacted. This could be based on the model contained in Victoria’s Disability Act 2006 (Vic).
Recommendation 12
The Disability Act 2006 (Vic) should be amended to extend compulsory treatment provisions to include all forms of cognitive impairment.
Recommendation 13
The Australian Government should amend the National Disability Insurance Scheme
(Specialist Disability Accommodation) Rules 2016 to remove rules which imply that participants requiring 24/7 supports also require shared supported accommodation.
Recommendation 14
The Australian Government should promote wider access to home share models and other emerging innovative housing options which foster community connections.
Recommendation 15
Section 4.10 of the National Disability Insurance Scheme (Specialist Disability Accommodation) Rules 2016 should be amended to include ‘whether the safety of the participant is compromised in their current living arrangement’ as an additional matter to take into account when an interim option is to be determined.
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Recommendation 16
The National Disability Insurance Agency (NDIA) should publish, consult on, and implement its Maintaining Critical Supports and Immediate Support Response policy and framework as a matter of urgency. This policy and framework should ensure that:
- providers of last resort mechanisms are established as an ongoing component of the
National Disability Insurance Scheme (NDIS) market
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multiple designated providers of last resort are clearly identified
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providers of last resort are adequately resourced to enable them to respond immediately in situations of market failure (which includes having staff available on short notice)
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the providers and their staff have specialised experience, skill and expertise that are relevant to the specific needs of participants
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clear procedures exist to guide planners, local area coordinators and support coordinators when the need arises for a provider of last resort to provide any approved support (not just ‘critical’ supports)
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participant plans have built-in flexibility for situations in which a provider of last resort is required, including the ability to access contingency funding
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as soon as possible, and where necessary, participants are transitioned back to support outside provider of last resort arrangements.
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- About the Office of the Public Advocate The Office of the Public Advocate (OPA) is a Victorian statutory office, independent of government and government services that works to safeguard the rights and interests of people with disability.’ The Public Advocate is appointed by the Governor in Council and is answerable to Parliament.
OPA provides a number of services including the provision of guardianship, advocacy, and investigation services to people with cognitive impairment or mental illness.? Under the Guardianship and Administration Act 2019 (Vic), guardianship is the appointment of a person (‘a guardian’) to make decisions for an adult with a disability (the ‘represented person’) when that person is unable to do so because they lack decision-making capacity in relation to the personal matter for which the guardianship order is sought. Appointments of a guardian are made by the Victorian Civil and Administrative Tribunal (VCAT). VCAT may appoint the Public Advocate as a guardian of last resort.* The role of the guardian is to act as a substitute decision-maker and to protect and promote the human rights and dignity of the represented person. Where they can be determined, the guardian makes decisions based on the will and preferences of the represented person and, where they are unable to be determined, in a manner to promote the personal and social wellbeing of the person. The will and preferences of the represented person can only be overridden if it is necessary to do so to prevent serious harm to the represented person. Therefore, the role of the guardian is to both promote the will and preferences and to safeguard the personal and social wellbeing, of the represented person.
In 2018-19, OPA was involved in 1,823 guardianship matters (978 which were new), 404 investigations and 258 cases requiring advocacy.* About 49 per cent of OPA’s new guardianship clients were over 65 years of age. More than half of OPA guardianship clients under 65 years of age were National Disability Insurance Scheme (NDIS) participants (58 per cent).
Under the Guardianship and Administration Act 2019 (Vic), OPA is also required to promote and facilitate informed public awareness and understanding about guardianship and administration laws and any other legislation dealing with or affecting persons with disability. OPA does this by providing an Advice and Education Service that offers information and advice on a diverse range of topics affecting people with disability. Last financial year, the advice service answered 13,344 calls, 29 per cent of which related to powers of attorney and almost one in ten related to neglect and abuse (nine per cent). OPA also coordinates a Community Education Program where staff address both professional and community audiences across Victoria on a range of topics including the role of OPA, guardianship and administration, enduring powers of attorney, and medical decision making.
’ Guardianship and Administration Act 2019 (Vic) pt 3.
- The Guardianship and Administration Act 2019 (Vic) defines disability “in relation to a person, means neurological impairment, intellectual impairment, mental disorder, brain injury, physical disability or dementia”: at section 3. This submission uses the terminology cognitive impairment and cognitive disability, in the context of the definition under that Act. However, OPA also acknowledges the definition of autism as contained on the Amaze website as “a neurodevelopmental disability that affects the way people communicate and interact with the world”: <https://www.amaze.org.au/understand-autism/about-autism/>.
° Guardianship and Administration Act 2019 (Vic) pt 2.
- Office of the Public Advocate (Vic), Annual Report 2018-19 (Office of the Public Advocate, 2019). 9. ° OPA Internal data.
OPA’s work is supported by more than 700 volunteers across four volunteer programs: The
Community Visitors Program, the Community Guardian Program and the Independent Third
Person Program. The Independent Third Person (ITP) Program provides volunteers who are available 24/7 to attend police interviews where the alleged offender, victim or witness have a cognitive impairment or mental illness. The ITP’s role is to ensure that the person being interviewed understand their rights and can communicate sufficiently to be interviewed. The ITP Program includes Corrections Independent Support Officers (CISO) who are experienced ITPs who support prisoners who have an intellectual disability at Governor’s disciplinary hearings at Victorian prisons and/or remand centres.
- About this submission The Public Advocate welcomes the opportunity to contribute to the Commonwealth
Parliamentary Select Committee Inquiry into Autism Services, Support and Life Outcomes
(the Inquiry). OPA has research and practice expertise in the Victorian context by virtue of its statutory functions that are relevant to the Inquiry’s terms of reference. This submission draws on the experiences of our clients to identify relevant systemic issues concerning autism services, support and life outcomes in Victoria.
The evidence used in this submission primarily comes from the published stories of OPA clients with Autism Spectrum Disorder (ASD), which have been de-identified, and pseudonyms used. Information from other OPA publications is also incorporated, including “I’m too scared to come out of my room”: Preventing and responding to violence and abuse between co-residents in group homes (“I’m too scared to come out of my room”) and The Illusion of ‘Choice and Control’: The difficulties for people with complex and challenging support needs to obtain adequate supports under the NDIS (The illusion of ‘Choice and Control’). Information provided by OPA guardians and other OPA staff knowledgeable about issues relating to people with ASD in their program areas is also included. Legislation and material derived from other organisations’ publications are also referred to where relevant.
This submission addresses select terms of reference of this Inquiry. These are, the interaction between services provided by the Commonwealth, state and local governments, including health and mental health, justice and housing, and the ability of the NDIS to support autistic people with complex needs, including those transitioning from prison settings.
2.1 A human rights approach This submission applies a human rights approach that:
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holds that all people with disabilities have the right to enjoy equality of opportunity and to effectively participate in, and to be fully included in society
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recognises that the majority of challenges experienced by people with disabilities are a result of disabling systems and environments, rather than being due to an inherent ‘lack’ in the individual
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sees impairment as an expected dimension of human diversity
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seeks for people with disability to be supported and resourced to have the capabilities to lead a dignifying and flourishing life.
2.2 OPA and People with Autism Spectrum Disorder (ASD) OPA is involved in a variety of ways with people with ASD through its guardianship, advocacy, advice, Community Visitor and ITP functions. Frequently these interactions can involve engagement with one person with ASD multiple times over the same or different issues. Often these issues are extremely complex and are not easily resolved. In some
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situations where a guardian is required to make a decision about accommodation or access to services, for example, there may be few options and none of these options may be appropriate. Or a guardian is unable to make a decision because there are no options available to address the situation.
The following tables provide some quantitative data regarding OPA’s involvement with people with ASD. The level of involvement may be even higher as many OPA clients have multiple disabilities, including ASD, but their data is not included here because autism was considered a ‘secondary’ disability and not recorded. (The ‘primary’ disability is often recorded as an intellectual disability or a mental illness). The qualitative case studies below indicate that ASD was usually only one of the client’s disabilities. Therefore, it is possible that OPA has dealt with an even greater number of people with ASD between mid-2016 and early 2020 than the following quantitative snapshot reveals.
2.2.1. A Quantitative Snapshot
This OPA internal data indicates that between July 2016 and December 2019, OPA has had 69 guardianship orders for 44 people with autism (some of whom have had multiple guardianship orders in that time), 17 individual advocacy matters and 353 matters involving general advice. The advice service may have provided advice about one person with ASD multiple times during this period.
Table 1 OPA Programs July 2016-December 2019
OPA Program Clients with ASD
Guardianship Orders 69
Clients 44
Advice Service 353
Individual Advocacy 17
Between July 2017 and February 2020, the ITP volunteers supported 271 clients with ASD, who may have been alleged perpetrators, victims, or witnesses in 429 interviews with Victoria Police. During the same period, CISO supported two clients with ASD at three Governor’s disciplinary hearings.
Table 2 ITP Programs July 2017-February 2020
ITP Program Clients with ASD Police Interviews/Governors’
disciplinary hearings
ITP 271 429
CISO 2 3
OPA uses information gained from its programs and its client data to highlight systemic issues in its areas of expertise that require reform, including policy and legislative changes that are in the remit of state or federal governments. OPA has advocated for improved access to services, support and life outcomes for people with ASD for many years. It has prepared submissions and reports that have discussed topics such as violence in group
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homes, access to justice and involvement with the criminal justice system, the appropriateness of shared supported accommodation, mental health, restrictive interventions and the NDIS and its understanding of people with ASD.6
- Early Intervention OPA recognises the importance of early intervention. Obtaining an early diagnosis at a reasonable cost within a reasonable time can significantly improve life outcomes for people with ASD. Children with undiagnosed autism for example, in a classroom, are sometimes seen as the ‘difficult children’ because of their behaviours and they can be alienated in the classroom because they don’t have the disability supports they need.
Currently, the waiting lists in the public health system are long and private practitioners are expensive. Therefore, OPA supports the recommendation from Amaze Inc. to provide free access to medical practitioners who have the expertise to diagnose autism at the earliest possible opportunity.
OPA is also aware that children with an autism diagnosis sometimes do not receive the supports they need in mainstream classrooms. This situation is compounded by the fact that the NDIS will not fund educational supports for children with ASD. But it is not always clear where the dividing line between educational supports and NDIS supports begins or ends. Therefore, sometimes children with autism fall through the gaps and OPA fears that this lack of support may lead to poorer outcomes later in life.
Often a diagnosis of ASD is not made until adulthood, after a significant number of behavioural issues have emerged. Sometimes a diagnosis is not made until a person is in prison. Developmental screening for ASD should be available in schools, hospitals, and prisons so that people with ASD can be provided with the support they need throughout their life course to enable a dignified, flourishing life.
Recommendation 1 The Australian Government should provide free access to registered health practitioners with the expertise to diagnose Autism Spectrum Disorder to enable an early diagnosis within a reasonable time to facilitate early intervention strategies as soon as practicable.
Recommendation 2 Australian jurisdictions should provide funding for developmental screening for Autism Spectrum Disorder in a variety of settings such as schools, health services and prisons. The person with Autism Spectrum Disorder should then be provided the disability support they need regardless of the setting.
6 Office of the Public Advocate (Vic.), ‘Submission to the Parliament of Victoria Family and Community
Development Committee Inquiry into Services for People with Autism Spectrum Disorder’ (OPA,
2016); Office of the Public Advocate (Vic.), ‘Submission to the Parliament of Victoria Social and Legal Issues Committee Inquiry into Youth Justice Centres’ (OPA, 2017); Office of the Public Advocate (Vic.), The illusion of ‘Choice and Control’: The difficulties for people with complex and challenging support needs to obtain adequate support under the NDIS (OPA, 2018);. Office of the Public Advocate (Vic.), “I’m too scared to come out of my room” : Preventing and responding to violence and abuse between co-residents in group homes (OPA, 2019); Office of the Public Advocate (Vic.), ‘Submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability: Health care for people with cognitive disability’ (OPA, 2020); Office of the Public Advocate (Vic.), ‘Submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability: The Criminal Justice System’ (OPA, 2020).
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- Health This section draws heavily on OPA’s recent submission on health care for people with cognitive disability to the Royal Commission into the Violence, Abuse, Neglect and Exploitation of People with Disability and repeats relevant recommendations.
Many people with cognitive disabilities, including people with ASD are admitted to, and reside in, hospitals where they can be subject to very high levels of supervision and restrictions on their liberty. While some people are clearly unhappy with the restrictions, others who may appear to be complying with, or acquiescing to them may not be giving full, free and informed consent.
The use of restrictive practices significantly infringes on a person’s human and legal rights and their use should be justified and authorised in each instance.’ In 2017, OPA wrote a discussion paper: Designing a deprivation of liberty authorisation and regulation framework.® The discussion paper in its entirety raises important considerations, but OPA draws one
key point here: alternatives to restrictive practices should always be sought when delivering supports to people with disability, and this is true across all social care settings. Person centred supports should be designed in a way that promotes wellbeing, and safety, thus avoiding the need for restrictions on one’s liberty. Sector-wide solutions are needed that encourage upskilling of staff, moving away from medical and institutional models of care, and strategies for creating services that enhance and promote human rights.
OPA is alarmed about the lack of safeguards around the use of restrictive practices in hospital settings, despite common knowledge that they are routinely used in hospital emergency departments and in other inpatient settings. This is especially concerning when there is evidence that health services are not always skilled at supporting people with
ASD, who have multiple and complex needs, as is well illustrated in Oliver’s story presented below.
Case story: Oliver
Oliver is a young man with an intellectual disability and ASD. He is non-verbal and has no use of sign language or other consistent body language cues; when he does not want someone or something, he will use his hands to push them or the object away.
Oliver was admitted to hospital for treatment of significant physical injuries sustained in an accident. Community Visitors found Oliver in rehabilitation following treatment for his injuries, naked and restrained to the bed by four-point shackles (i.e. ankles and wrists). They made a notification to the Public Advocate. OPA undertook an investigation and subsequently became involved as a guardian and an advocate.
” OPA adopts the language and definitions from the National Framework for Reducing and Eliminating the Use of Restrictive Practices in the Disability Service Sector: A ‘restrictive practice’ is defined as any practice or intervention that has the effect of restricting the rights or freedom of movement of a person with disability, with the primary purpose of protecting the person or others from harm. According to this definition, restrictive practices include seclusion, chemical restraint, mechanical restraint, physical restraint, and other practices, all of which are further defined in the Framework.
® Office of the Public Advocate (Vic.), Designing a deprivation of liberty authorisation and regulation framework: Discussion paper (2017). <https://www.publicadvocate.vic.gov.au/resources/research-reports/restrictive-practices>.
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OPA discovered that restrictive practices had been used on Oliver for many months and that he was subject to three restraint mechanisms that affected his freedom: psychotropic medication to quieten him, shackles to physically restrain his movements, and containment to prevent him from leaving the unit.
As a result, his level of agitation steadily increased with behaviours related to rectal digging, taking off his clothes and wanting to be naked, defecating on the floor, and at times being very physically agitated.
Initially, Oliver was unable to comply with medical advice so there was a clinical need for the use of physical restraints to enable Oliver’s injuries to heal. Once Oliver’s injuries had healed, the treating team continued with these measures because of concerns for staff safety. The hospital also advised that Oliver’s family had approved the use of restrictive practices, however, it is unclear under what authority they could do so.
Some months passed until the Department of Health and Human Services (DHHS) agreed to fund behaviour specialists to work with Oliver while in hospital.9 The behaviour specialists worked with Oliver for up to 12 hours a day, during which time it was possible to remove the shackles to reduce his levels of agitation. While nursing staff were invited to remain in the room when support workers were present in order for them to learn engagement strategies, they instead observed from outside the room.
Similarly, Oliver’s restraints were also removed when his family visited, yet Oliver’s family found the hospital reluctant to let them educate staff on how to support their son. Further, the hospital refused to let his family take him out onto the hospital grounds with a wheelchair. When the disability workers or his parents were unavailable, Oliver remained under restraint for the entire day.
Oliver’s mobility was compromised by his injuries to the extent that he could not walk, and there were concerns that this could be permanent. Despite this, Oliver was not provided physiotherapy or occupational therapy because staff were too scared to interact with him unless he was shackled.
It was many months after his initial admission to the hospital that DHHS offered Oliver suitable interim accommodation. He was eventually offered permanent shared supported accommodation where he now continues to reside.
Source: OPA submission to the Royal Commission on Disability – Health 2020, 16 17, with minor omissions.
In hospitals, no legislated safeguards apply but the common-law doctrine of necessity can be used in an emergency. In Oliver’s story, the hospital initially relied on the doctrine of necessity to justify their use of restrictive practices. The common-law doctrine of necessity may justify an action when:
(1) there is a necessity to act when it is not practicable to communicate with the assisted person and
9 Oliver’s story predates the introduction of the NDIS, which explains the involvement of the DHHS.
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(2) the action taken is such as a reasonable person would in all the circumstance take acting in the best interest of the assisted person.10
However, the scope of the doctrine is uncertain in terms of the period of time for which it may apply without oversight and review, and whether it applies to actions that are necessary for the benefit of others (such as hospital staff). In its paper on designing a deprivation of liberty framework, OPA referred to a case in the United Kingdom where the court held that the “intense” restraint of a 16 year old boy with autism for 40 minutes amounted to a deprivation of liberty.11 This would suggest that the period of time Oliver was restrained was excessive and that the hospital’s actions should have been subject to oversight and review. Sadly, Oliver is not an isolated case. OPA guardians continue to work with people with cognitive impairment who are subject to restrictive practices in hospitals on an ongoing basis where the justification for the practices is the safety of staff. Nevertheless, health practitioners have no obligation to report the circumstances in which they use restrictive practices or for how long. The lack of formal legal authority is one part of the problem. In many cases, it is unclear whether such deprivations of liberty are substantively necessary or justifiable.
The doctrine of necessity is not sufficient to safeguard the human rights of hospital patients. OPA is seriously concerned that restrictive practices that are prescribed and administered by health practitioners can go unmonitored because of a lack of regulation by an appropriate body.
Recommendation 3 Federal and State Health Ministers should develop and implement urgently a legislated safeguarding framework to oversee the use of restrictive practices by health practitioners in hospital settings.
Recommendation 4 The Australian Health Practitioner Regulation Agency should ensure that ongoing professional development opportunities are available on the lawful use of restrictive practices. In Victoria, this would include compliance with the Charter of Human Rights and Responsibilities Act 2006 (Vic).
Recommendation 5 Each hospital network should consider having at least one autism spectrum disorder specialist available to consult with and educate other doctors about best practice approaches to patient management that address adequately the disability support needs of people with Autism Spectrum Disorder.
- Mental Health This section draws on OPA’s recent submission to the Royal Commission into Victoria’s Mental Health System and updates its recommendations.
Amaze Inc’s research indicates that people with ASD are particularly vulnerable to developing mental illness later in life, such as depression and anxiety, especially in late adolescence.12
10 In Re F [1990] 2 AC 1. 11 Office of the Public Advocate, Deprivation of Liberty Framework 33.
12 Royal Commission into Victoria’s Mental Health System, Interim Report (The Government Printer,
- 43, citing submission from Amaze Inc.SUB.0002.0029.0457, (2019) 11. 13
This means that some people with ASD are being treated for a mental illness without clinicians being aware of the underlying autism. Hospital readmissions can result from not treating the underlying cause, putting considerable strain on the mental health system as well as families and carers who struggle to help the person they care for get well. For the person, it can result in self-harm or suicide as they become more and more hopeless of improvement in their lives.
The costs to the community of failing to appreciate the underlying cause of the psychosocial distress of people with autism can also escalate exponentially. In OPA’s report, The Illusion of ‘Choice and Control’, the NDIS represented an ‘illusion of choice’ for seven out of 12 people who had suspected or confirmed autism.13
Recommendation 6 The Australian Practitioners Health Authority should ensure that mental health practitioners undertake professional education about Autism Spectrum Disorder and its interaction with mental illnesses, especially anxiety and depression.
- Criminal Justice System 6.1 Ensuring Access to Justice and the ITP Program
Article 13 of the United Nations Convention on the Rights of Persons with Disabilities (the Convention) – Access to justice – states that:
States Parties shall ensure effective access to justice for persons with disabilities on an equal basis with others, including through the provision of procedural and age appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including at investigative and other preliminary stages.
The ITP Program puts the principles of this article of the Convention into practice through providing independent volunteers on a 24/7 basis to assist people with cognitive disability attending police interviews, to understand their rights either as suspects, victims or witnesses. OPA’s research report, Breaking the Cycle: Using Advocacy-Based Referrals to Assist People with Disabilities in the Criminal Justice System (Breaking the Cycle), found that people with cognitive impairments were particularly at risk of maintaining a cycle of ‘poverty, isolation and contact with crime, becoming “repeat presenters” with the ITP program.’14
In the 32 years of the program, ITPs have completed more than 40,000 interviews. Anecdotally, the program observes that the ability of people with disability and/or mental illness to communicate their experience and understand their rights increases with the assistance of an ITP. Volunteers are pleased to see a growing awareness and understanding of disability among police members, although there are some improvements that could be made. OPA has long advocated for the ITP Program, which has operated since
13 Office of the Public Advocate (Vic.), above n 5, 16.
14 Magdalena McGuire, Breaking the Cycle: Using Advocacy-Based Referrals to Assist People with
Disabilities in the Criminal Justice System (Office of the Public Advocate, 2012) 6.
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1988, to be enshrined in legislation to give full effect to Australia’s obligations under the Convention and to increase consistency in the use of ITPs across Victoria.
Enshrining the ITP Program in legislation would ensure it is more adequately resourced. As it stands, despite the steady and increasing demand for the ITP Program, funding has not kept pace, hampering the ability of the program to ensure trained ITPs are available when required. The strain on both ITP Program staff and volunteers is at times so great that the provision of ITPs in some regions is not sufficient. Current estimates show that about 10 per cent of requests for an ITP do not receive a response. On average, this represents 42 interviews per month where a person with disability misses out on this important safeguard due to volunteer unavailability, remote location of police stations, or gaps in the roster. Simply put, the program is not sufficiently resourced to respond to the demand.
OPA notes that Victoria is the only Australian jurisdiction that has an ITP or similar program. ITPs are a safeguard that could benefit all Australians with cognitive disability and, therefore, OPA extends the recommendation below to all Australian jurisdictions.
Recommendation 7
Australian jurisdictions should legislate and establish Independent Third Persons (ITP) Programs. The legislative provisions should include:
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a requirement for an ITP to be present when interviewing a person with an apparent cognitive impairment or mental illness: o irrespective of age o whether they are an alleged offender, victim, or witness
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a penalty to be imposed when the requirement for an ITP is not complied with – e.g. evidence from an interview may be inadmissible if the procedure was not compliant with the ITP requirement
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a requirement for the ITP program to be adequately resourced to meet its legislated functions, based on modelling of demand.
Recommendation 8
The Victorian Government should resource adequately the Independent Third Person Program (ITP) to respond to demand.
OPA repeats a recommendation made in Breaking the Cycle and “I’m too scared to come out of my room”.
Recommendation 9
The Victorian Government should expand the role of the Independent Third Person Program (ITP) to provide:
- support in hearings in courts and tribunals
- referrals to service and support agencies. OPA is concerned that prisons have become institutions for people with cognitive disability and mental illness who have been failed by other service systems that have been unable to meet their complex support needs. In part, this is the case because of the lack of a ‘provider of last resort’ of appropriate disability accommodation and supports that will take on clients with the most complex needs.
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Article five of the Convention – equality and non-discrimination – upholds that all persons are entitled to equal and effective legal protection against discrimination on all grounds. The right of persons with disability not to be criminalised is embedded, albeit implicitly, within Article five.
Empirical research is clear that cognitive disability does not inherently lead to criminal or offending behaviours. Rather, it is the cumulative effect of social and economic disadvantages faced by many people with disability—including a legacy caseload of people who have spent most of their lives in large-scale disability institutions—that can result in their involvement with the criminal justice system.15 The criminal justice system is ill-equipped and under-resourced to respond effectively to the needs of people with disability, despite often meaningful efforts and ongoing reform. This can amplify the risk for further disadvantages such as homelessness, substance use, and future offending behaviours.
What follows draws heavily on OPA’s recent submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability Issues Paper on the Criminal Justice System and repeats some of its recommendations.
6.2 Pre-release planning
Providing continued care in the transition from prison to the community is known as ‘through care’; it involves pre-release planning that, ideally, is initiated in the weeks before a prisoner’s release. Through care and pre-release planning are critical in the rehabilitation of prisoners. It can prevent future custody by supporting individuals throughout a momentous life transition. To be successful, correctional staff must engage prisoners in the process and community-based specialised supports must be available post release, but often they are hard to source. Shortages may be due to limited funding, an unwillingness of NDIS providers to take on clients with offending behaviours (as discussed further below), as well as growth in the prevalence and severity of mental illness and disability among prisoners.
Case story: Mark
OPA received a letter from Mark, who identified as having autism, mental health issues, and substance abuse. For many years, he cycled in and out of prison.
Mark has good insight into the risk he can pose if he is not well-supported when living in the community. He expresses a strong desire to contribute positively to his community but acknowledges that he needs supports to do this and is proactive in seeking them. For instance, in preparation for a previous release from prison, he requested a prison support worker to establish a transition support plan where he requested assistance with housing, Centrelink, mental health, and substance abuse services. However, a few days before his release, he had not yet heard back from the support worker to know how to access the supports on release. He reminded the prison staff of his request but never received an answer. Mark was released in the evening with none of the supports he identified and nowhere to go.
When OPA spoke to Mark, in response to his letter, he was in custody in a maximum-security prison with an upcoming release date. He was distressed about returning to the community and while he hoped this release would be more
15 R. M Causland & E. Baldry “‘I feel like I failed him by ringing the police’: Criminalising disability in Australia’. (2017) 17 (3) Punishment & Society, 290-309. DOI: 10.1177/1462474517696126
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successful than the last, he had not received any support from prison staff to set himself up for a successful transition back to the community. OPA asked Mark whether he had an NDIS plan, but he was not aware of the scheme or how to access it. He remained optimistic and sought assistance from OPA in the absence of any pre-release planning.
Source: OPA submission to the Royal Commission on Disability —- Criminal Justice System 2020, 27-28.
The Victorian Ombudsman’s 2015 report into the rehabilitation and reintegration of prisoners identifies the many risks faced by individuals upon prison release. There is a high risk of death in the few months post release, with the two most frequent causes of death being related to mental health, namely drug overdose and suicide. Housing insecurity is one of the main factors predicting return to prison. The Ombudsman links the high mortality rate and risks of re-offending to a failure to organise wrap-around supports at a time when individuals are rebuilding their lives. ’°
Anecdotally, OPA notices a contrast in pre-release planning between prisoners who have a network of informal supports and those that do not. Unfortunately, those without natural supports are disadvantaged in that they are less likely to be released and, therefore, remain in restrictive environments because they lack the community supports.
It is the justice system’s responsibility to regulate correctional services, but governments, more broadly, have a duty of care to fund adequately and resource community-based services to prevent injustice and support all people to avoid unnecessary detention and deprivations of liberty. The need to protect the community is valid but it should be met with rigorous and best practice treatment approaches, adequately priced services offered by skilled workers, and perhaps, most importantly, secure community accommodation options.
Mark’s story illustrates how the release from prison can be distressing when there are limited dedicated support programs. Better integration of services and coordination between the justice, disability, and mental health systems is needed to ensure a person is fully supported while in detention and on release. Pre-release planning should, of course, involve the NDIA, where applicable, whether that be through the lodging of an access request or scheduling a plan review in preparation for a prisoner’s release. OPA and many others lobbied the NDIA to allow NDIS plans to be established prior to a prisoner’s release from custody, but there are many challenges.
In line with the “Principles to determine the responsibilities of the NDIS and other service systems” agreed to by the NDIA and the Victorian Government in 2015 and the terms of the bilateral agreement between the Victorian and Commonwealth Government in 2019, Corrections Victoria has responsibility for ensuring the effective transition of “people with disability out of custodial settings, in line with supports offered to other people in custodial settings. ’’ Furthermore, with regards to the 2015 principles made under the previous bilateral agreement, the current 2019 the bilateral agreement stated that:
‘© Ombudsman of Victoria, Investigation into the rehabilitation and reintegration of prisoners in Victoria, (Ombudsman, 2015).
” Council of Australian Governments, “Principles to determine the responsibilities of the NDIS and other service systems”, (COAG 2015). <https://www.coag.gov.au/sites/default/files/communique/NDIS-Principles-to-Determine-Responsibilities-NDIS-and-Other-Service.pdf> 21.;
Council of Australian Governments “Bilateral-agreement-between-the-commonwealth-of-australia and-victoria-on-the-national-disability-insurance-scheme”, (COAG 2019) Schedule E.
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The parties renew their commitment to meet responsibilities under the Principles to Determine the Responsibilities of the NDIS and other service systems (the Principles), and in particular agree to work together to ensure participants receive coordinated supports from the NDIS and mainstream systems.
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The parties agree to work … to collaboratively: a. develop individual responses for participants experiencing support gaps; b. develop bilateral systemic responses to service gaps affecting multiple participants; and
c. participate in work towards multilateral systemic responses where these are necessary.
d. Ensuring continued relevance of the principles.18 As ‘Mark’s story’ and OPA’s experience indicates, these undertakings are not happening in some cases.
Recommendation 10
The Commonwealth and Victorian Governments should abide by the “Principles to Determine the Responsibilities of the NDIS and Other Service Systems” appended to Schedule E of the bilateral agreement on the NDIS, with specific reference to the principles applying to the criminal justice system.
6.3. Compulsory treatment under the Disability Act 2006 (Vic)
One form of specialist supports that is available to some people with disability who have a history of offending behaviours is through compulsory treatment under the Disability Act 2006 (Vic). It should be noted that this form of detention is non-punitive and non-custodial. Detention is community based or in a purpose-built facility. The Supervised Treatment Order (STO) regime set out in the Act aims to bring greater fairness and scrutiny to decisions affecting the personal liberties of people with intellectual disability.
In Victoria, the Act sets out a legal framework for the civil detention and compulsory treatment of people with intellectual disability who are found to pose a significant risk of serious harm to others. The legislation requires that the person with an intellectual disability derives a ‘benefit’ from being placed on a STO, and that the levels of restrictions on the person’s life be incrementally reduced over time.
VCAT can make a STO for no longer than 12 months, at which point a new application has to be made and again tested against the legislative criteria, but there is no limit in the number of applications that can be made. A key element to the test is that the proposed treatment plan benefits the person as well as manages any risk they pose to others.
The Act provides a range of provisions in relation to supervised treatment, which are aimed at protecting the rights of people subject to STOs. OPA believes that STOs bring a significant level of transparency and fairness to the detention and compulsory treatment of people with intellectual disability in Victoria. STOs, as a civil regime, also have the advantage of intervention at an earlier point than the criminal justice system; in this way, they can divert persons away from the criminal justice system into the community, albeit with augmented supports and supervision.
In OPA’s view, the effectiveness of the STO regime is largely due to its matrix of elements.19
18 Ibid.
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The process that leads to the development of a treatment plan includes the engagement of skilled professionals, the scrutiny of the Senior Practitioner who must approve the plan, and VCAT which must make the STO having regard to the plan.
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The external bodies involved in regulating and scrutinising the use of STOs (VCAT, the Senior Practitioner, and OPA) are obliged to ensure that the rights, dignity and interests of the person with the intellectual disability are protected.
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Victoria Legal Aid’s specialist advocacy for persons proposed for or subject to detention.
However, the STO regime is only available to individuals with intellectual disability, to the exclusion of other forms of cognitive impairment. The Mental Health Act 2014 (Vic) provides a framework for the compulsory treatment of people with mental illness, but there is a gap in relation to individuals with ASD who may be detained in a custodial environment because they are not eligible for an STO.
OPA considers that the Victorian STO process could be a model for other jurisdictions to consider.
Recommendation 11 Australian jurisdictions should consider whether legislation enabling treatment-based detention should be enacted. This could be based on the model contained in Victoria’s Disability Act 2006 (Vic).
OPA believes that the STO regime should be available to people with all forms of cognitive impairment.
Recommendation 12 The Disability Act 2006 (Vic) should be amended to extend compulsory treatment provisions to include all forms of cognitive impairment.
- National Disability Insurance Scheme (NDIS) 7.1 Accommodation OPA guardians have noted that several service systems have failed their clients with ASD who have multiple and complex needs. These failures occurred under the state-based systems funded by the DHHS, the NDIS and the Victorian prison system.
In “I’m too scared to come out of my room”, the violent behaviour of one resident with ASD and other conditions forced the other four residents to move out. After numerous emergency interventions because of the resident’s violent behaviour towards staff, DHHS finally agreed to move this resident to a purpose-built house, where he was the sole occupant.20
In the same report, another resident with ASD and mental health conditions was a victim of assault by another resident in his group home. He remained in a mental health unit for seven
19 Office of the Public Advocate (Vic.), ‘Submission to Senate Community Affairs References Committee on the indefinite detention of people with cognitive and psychiatric impairment in Australia’ . (April 2016) 15. 20 Office of the Public Advocate (Vic.), n 5, above 17.
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weeks and did not want to return to his group home while the violent resident remained there. Long delays exacerbated the situation and a dispute ensued between the NDIS and DHHS over who should rehouse the man.21
An NDIS plan review for the resident took months. Eventually, it was accepted that he should move, however, the NDIA said that it could not fund housing. Meanwhile, DHHS said that, in an NDIS environment, it was not its responsibility to rehouse the co-resident. To facilitate his discharge from hospital, NDIS funding was utilised for temporary accommodation for the assault victim, however, this reduced the amount available to him for other purposes.22
The subtitle of this report, ‘responding to violence and abuse between co-residents in group homes’, points to the crux of the issue. Shared supported accommodation can become violent places when the client mix is unsuitable because of the various complex support needs of clients and the existence of a one-size-fits all option. This second case highlights the severe negative consequences for the person with ASD when they are caught in the middle of a ‘turf war’ between two competing government agencies who are both avoiding taking responsibility for the situation. Therefore, the client bears the brunt and the costs of an inadequate solution to the problem of a lack of appropriate housing. More innovative solutions are required for people with have complex support needs that look to a range of housing options apart from the sole option of 24/7 shared supported accommodation with five residents who did not choose to live together.
OPA repeats relevant recommendations from “I’m too scared to come out of my room”.
Recommendation 13
The Australian Government should amend the National Disability Insurance Scheme
(Specialist Disability Accommodation) Rules 2016 to remove rules which imply that participants requiring 24/7 supports also require shared supported accommodation.
Recommendation 14 The Australian Government should promote wider access to home share models and other emerging innovative housing options which foster community connections.
OPA also repeats a relevant recommendation from its submission to the NDIS Act review.
Recommendation 15 Section 4.10 of the National Disability Insurance Scheme (Specialist Disability Accommodation) Rules 2016 should be amended to include ‘whether the safety of the participant is compromised in their current living arrangement’ as an additional matter to take into account when an interim option is to be determined.
In OPA’s experience, the NDIS and its processes has not been very successful in transitioning people with ASD who have challenging and complex needs from prison into the community. OPA acknowledges the recent deployment of Justice Liaison Officers between the NDIS and the prison system is a positive first step. However, more needs to be done to address the need for a provider of last resort in an NDIS market-based system, where providers can choose not to take on clients with complex needs or where providers do not have the requisite skills or where an appropriate provider does not exist in a given area or region.
21 Office of the Public Advocate (Vic.), n 5 above, 29, 22 Ibid, 29. The last two paragraphs are taken directly from the report and have not been paraphrased.
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7.2. No Provider of Last Resort
OPA has written extensively on the outstanding issue of provider of last resort. OPA refers the Committee to its 2018 report, The illusion of ‘Choice and Control and OPA’s recent submission on the criminal justice system to the Royal Commission on the abuse, neglect and exploitation of people with a disability.
Ultimately, in the absence of willing providers in a market-based sector, no entity holds the duty of care, once squarely owed by governments, to provide services to people with disability. In the NDIS market, no one provider can be called on to step in in the event of market failure.
In addition to the issue noted above, some specialist providers are leaving the market altogether as they claim the individualised funding model does not lend itself to funding services at the intersection of justice and disability. OPA holds grave concerns about the growth stunt in the forensic disability sector, especially in community settings. An important gap is created in the absence of DHHS and the dearth of specialist providers in the market. Moreover, further market issues are expected as providers struggle to survive in the sector during the COVID-19 crisis. There is urgent need for government intervention to ensure a provider of last resort can fill gaps in the market.
OPA notes the recent commencement of the Exceptionally Complex Needs Support (ECSN) Program, a two-year program funded by the NDIA. Cohealth is the ECSN Program provider in Victoria. It has a number of functions, namely, to support disability service providers by offering subject matter expertise, capacity building and an after-hours crisis referral line.23 OPA welcomes this initiative and will monitor its implementation.
Below are recommendations contained in The illusion of ‘Choice and Control’ and OPA’s submission to the Disability Royal Commission’s Criminal Justice System Issues Paper.
Recommendation 16 The NDIA should publish, consult on, and implement its Maintaining Critical Supports and Immediate Support Response policy and framework as a matter of urgency. This policy and framework should ensure that:
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providers of last resort mechanisms are established as an ongoing component of the NDIS market
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multiple designated providers of last resort are clearly identified
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providers of last resort are adequately resourced to enable them to respond immediately in situations of market failure (which includes having staff available on short notice)
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the providers and their staff have specialised experience, skill and expertise that are relevant to the specific needs of participants
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clear procedures exist to guide planners, local area coordinators and support coordinators when the need arises for a provider of last resort to provide any approved support (not just ‘critical’ supports)
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participant plans have built-in flexibility for situations in which a provider of last resort is required, including the ability to access contingency funding (as recommended earlier)
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as soon as possible, and where necessary, participants are transitioned back to support outside provider of last resort arrangements.
23 For more information, see Cohealth, exceptionally complex support needs program, https://www.cohealth.org.au/ndis/exceptionally-complex-support-needs-program/.
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