Submission 144 — Learning for Life Autism Centre — Select Committee on Autism | External submission

25 -27 High Street South, KEW VIC 3101

PO Box 7118, HAWTHORN NORTH VIC 3122

www.learningforlife.com.au

ABN: 47 260 122 955

A0045305N

Select Committee on Autism Submission

Background

We would like to begin this submission by introducing Learning for Life and the particular group of autistic children that we are focusing on. The Learning for Life Autism Centre Inc. (L4L) was established in Melbourne, Victoria, in 2004 as a not-for-profit organisation. Our mission is to provide the highest standard of behaviour-based interventions to help autistic children and their families reach their full potential, regardless of their financial circumstances. In 2010, L4L expanded to provide a school behaviour support program. Since then we have supported 158 students aged between 5 and 18 years across 129 state, Catholic and independent schools. In 2016, L4L also began delivering a 12-month, school-wide program called Inclusion Works which is funded by philanthropic donations. The program involves a L4L supervisor working at a school one day a week for the period of one year to deliver theory training and practical coaching to teachers on how to support a range of autistic students. To date the program has been delivered in four schools and 72 teachers have received training in the delivery of behaviour-based interventions to support a total of 93 autistic students.

Through this work across Victoria, we regularly encounter a group of autistic students who do not receive the support they require. These autistic students have adequate language and cognitive skills but experience significant difficulty learning to navigate the social world without engaging in a high rate of behaviours of concern. This particular profile means these children are often diagnosed with autism later in childhood as they fly under the radar in early childhood settings. Behaviours of concern typically increase significantly as children enter the structured environment of school. However, these children often do not meet criteria for school funding. Without support, they are not only at greater risk of being excluded from the education system altogether, but their behaviours can quickly escalate, rendering themselves, others and/or their property in potential danger. Behaviours of concern that L4L clients have previously demonstrated include the following:  Breaking another child’s collar bone;  Injuring family pets;  Breaking windows;  Pulling seatbelts off in moving vehicles;  Throwing shoes at the driver;  Hitting their peers with sticks;  Placing peers in headlocks;  Stabbing a teacher with scissors;  Setting fires.

We do not provide the examples above to sensationalise the circumstances of this group of autistic students. In fact, they tend not to be discussed outside of closed professional circles because it is so easy to simply miss-label this group as ‘naughty’ students. This couldn’t be further from reality. These are autistic students whose social difficulties have prevented the development of emotion regulation skills or an understanding of the social norms that provide boundaries to behavioural expression. We know now that we need to shine a light on this profile of autistic students to ensure they have the chance of receiving the support they need. L4L has supported 58 autistic students who fit this profile and is continuing to support many of these students in 2020. We are making this submission to highlight the needs of this particular profile of autistic students and to propose some recommendations that would enable these autistic students to reach their full potential.

Terms of Reference

G. The social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people.

The social and economic cost of failing to provide adequate and appropriate services for this group of autistic students can be significant. We are not going to focus on the broader social and economic costs as we believe others are better placed to address those. Instead, we will focus on the social costs for the individual children and their families. Even more importantly, we aim to highlight what would be considered ‘adequate and appropriate services’ for this group of autistic students who engage in significant behaviours of concern.

In the school context: Students who exhibit behaviours of concern have often been:  Suspended from school;  Asked to attend for reduced hours; and/or eventually  Expelled from school

It is often while students are experiencing these scenarios that L4L’s support is sought by families. Of the 58 autistic students with this profile that L4L currently or has previously supported, 35 have experienced one or more of these scenarios throughout their education history. The social impact for the child and family is enormous and families may face additional financial burdens. The student’s education is affected simply by the fact that they have been absent for extended periods of their education. These absences make it harder for them to develop and practice a range of prosocial behaviours that, in the long run, will reduce their behaviours of concern. This level of disengagement and exclusion is often also reflected in the wider community.

In the context of the wider community: These autistic students are often excluded from engaging in co-curricular activities such as sports or music lessons because mainstream services feel they cannot support their behaviours of concern.

At its most significant level these exclusions from school and community settings can result in autistic students whose behaviours of concern bring them into contact with the justice system. Alternatively, sometimes parents’ only choice becomes to relinquish their autistic children altogether. To highlight the complexity, one L4L client experienced periods during which emergency services were called multiple times per week and has had members of the public press charges multiple times. The goal for such a student must, by necessity, become diverting their trajectory away from the justice system. L4L believes that these types of cases highlight the importance of providing intervention as early as possible to prevent the behaviours of concern reaching a point where interactions with the justice system are required.

Missing key life events: In terms of key life stages, without early and adequate support these autistic students are likely to miss the opportunity to:  transition to less supported secondary school options;  develop the skills to stay at home on their own or access the community with friends;  engage in work experience opportunities;  engage in meaningful employment; and/or  travel.

These missed opportunities result in young people with autism being denied the chance to reach their full potential, which in many cases would also allow them to make a meaningful contribution to the economy and society. This opportunity cost is amplified when we consider the significant funding that is required to keep these students and those around them safe as they get older and become young adults. Many of these social and economic costs can be reduced or even avoided with the delivery of behaviour-based interventions as early as possible.

What do adequate and appropriate services look like? They are behaviour-based interventions that are delivered by experienced behaviour specialists within the autistic child’s everyday environments of school and home. This requires the behaviour specialist to conduct regular observations within the school and home environment.

While the benefit of behaviour-based interventions has become more commonly acknowledged in recent years, what these interventions actually entail is not as well understood. The key stakeholder groups, such as school leadership, Student Support Service Officers, NDIS planners and support coordinators, need training to understand exactly what behaviour-based interventions involve. The information gathered from observations of students within their everyday environments is used to design individual, proactive and reactive behaviour management strategies that are appropriate to that particular environment. It is then the team of adults around the autistic child (e.g. parents, teachers and education support staff) who are trained to implement the strategies on a daily basis. This process is

consistent with the positive behaviour support framework, which is commonly discussed as best practice, particularly within school settings.

The quote below, from a school provides an example of the process involved in behaviour based interventions:

Sarah Wood has spent a great deal of time working with Primary School as an Educational and Developmental Psychologist. She has worked both with specific children and teachers to assist in the management of children with Autism Spectrum Disorder whose main difficulty is challenging behaviours.

Sarah was able to come into and spend time observing, demonstrating and explaining the function of these student’s behaviours to enable us to respond more appropriately and successfully to these students. Her ongoing support meant that our teachers and education support staff were able to learn how to manage severe challenging behaviours, related to ASD, with consistency to achieve outcomes we never anticipated for students who were misunderstood or coping in the best way they were capable of. Sarah’s modelling of various approaches and strategies was irreplaceable in upskilling our staff to manage severe behaviours. The time we were able to spend with her was highly engaging and ensured our staff were extraordinarily well trained to respond to a range of behaviours appropriately.

Acting Assistant Principal

Primary School

Notwithstanding other similar endorsements, the reality is that many policy and funding constraints make these behaviour-based interventions difficult to deliver. These constraints as well as recommendations to address them are provided in the remainder of the submission.

K. The social inclusion and participation of autistic people within the economy and community.

We know that it is vital to continue focusing on the inclusion and participation of autistic children within the community, both for the benefit of the autistic children and the benefit of the wider community. While the group of autistic students we are focusing on require support to help them learn to engage more positively with people and their environments, it is just as important that we are supporting the community to understand and be respectful of how autistic people may process and engage with the world around them. This is only possible if autistic children continue to be a part of their community.

In terms of autistic children, one of their primary community settings is school. The group of autistic students we are focusing on are typically enrolled in mainstream schools and often have limited support within this setting. This is because their language skills are typically too

high to meet the Program for Students with Disabilities (PSD) funding criteria under the category of Autism Spectrum Disorder. They also typically do not have an Intellectual Disability so do not qualify for funding under that category. Whilst a funding category for Severe Behaviour Disorder exists, a requirement to qualify is that the severe behaviour cannot be accounted for by autism or intellectual disability. By definition, therefore, the profile of autistic students we are discussing in this submission are ineligible for this category of funding. While in reality it is sometimes possible for students to receive funding under this category, achieving this often requires professionals to make very strong justifications as to why the student’s severe behaviour is in excess of what would typically be expected for an autistic student. Such reports take significant amounts of time and money to produce and detract from time that could be otherwise spent focusing on teaching the students in need.

It is our belief that schools that resort to suspending, expelling or limiting the attendance of autistic students do so because they lack the support to mitigate the risk to the school, the child’s peers and the wider community. These autistic students’ behavioural presentations can be confronting and can often heighten the emotional states of other students, staff, parents and the wider school community. As the quote below demonstrates, L4L has had many successes in supporting schools to move past this thinking and see that this group of autistic students are fully capable of learning how to engage positively in a mainstream environment.

Our experience with children with challenging autistic behaviours over the past several years has been an emotional and sometimes overwhelming time for our teachers, students and school community. The behavioural extremes that we have had to manage have been perplexing and at times extremely challenging. Managing children with extreme and sometimes quite violent outbursts can be very difficult within a school setting. All teachers and ES staff are prepared to do their best to include, encourage and hopefully engage these students however at times it becomes near impossible to manage a class of students with many individual needs as well as provide the appropriate support for one or more of these children. Learning 4 Life came to our attention when we enrolled a behaviourally challenged child around 6 years ago. Sarah Wood was the ‘Educational and Developmental Psychologist’ who was working with that particular child and she had allocated sessions to visit the classroom to assist the child and support the teacher. The support that was given to our school was remarkable in that it made a difference to the child and supported the professional growth of the teacher in that classroom.

Principal

Primary School.

H. iii. The ability of the NDIS to support autistic people with complex needs, including those transitioning from prison settings.

The funding shortfall of the PSD funding explained above is also similar within the NDIS system. This group of autistic students are often considered ‘complex’ in their support needs, although the definition of a ‘complex client’ differs across professions. For the purpose of this submission we will contain the discussion to the NDIS definition.

NDIS Participants are identified for the Complex Support Needs Pathway by the complexity of their situation and personal factors such as being homeless or returning to the community from living in residential aged care. Involuntary or voluntary involvement with particular government systems such as Justice or mental health would also be factors which would necessitate entry to the complex support needs pathway. (https://www.ndis.gov.au/news/1002-improved-ndis-planning-people complex-support-needs)

L4L welcomed the rollout of a NDIS Complex Support Needs Pathway in November 2018, however, the reality of the pathway is that it only becomes available once behaviours of concern reach such a point that the autistic person is intersecting with government agencies such as the Department of Health and Human Services or the justice system. This means that most of the autistic students profiled for the purpose of this submission are not eligible for the Complex Needs Support Pathway because they are still young and have not yet come into contact with other government agencies. In fact, only one of L4L’s clients has met the criteria for accessing the Complex Support Needs Pathway. That experience was extremely positive but, as the example below demonstrates, L4L has not had success getting other clients accepted into this NDIS pathway. In March 2020, the parent of one of L4L’s clients was told that her 8-year-old son was too young to be considered for a ‘specialist support coordinator’ one of the positive and practical inclusions in the Complex Support Needs Pathway. This was despite multiple professionals’ letters and reports highlighting the family’s need for this type of support. Without the support of a ‘specialist support coordinator’ the family will be unable to access the specialist services their child requires.

These funding shortfalls within the NDIS and PSD systems make it difficult for services such as L4L to provide early intervention for this group of autistic students. Term of reference D for this inquiry highlights the importance of considering ‘international best practice with regards to… support services and education, effectiveness, cost…’. In the case of all autistic children international best practice is early intervention. As it stands, professionals who work in this field, such as L4L, know the key features of best practice interventions but are often too constrained by funding shortfalls to be able to provide them. Nonetheless, we do acknowledge that the NDIS criteria mean this profile of autistic students are more likely to receive NDIS funding than they are to receive funding through the Department of Education’s PSD funding.

In relation to NDIS funding, the biggest difficulty for professionals working with this group of autistic students becomes the most appropriate setting in which to provide these autistic students with support. As was highlighted on page 2, school is often this group of autistic students’ only community environment. Nonetheless, the NDIA guidelines on how NDIS funding intersects with school funding are not clear cut (https://www.ndis.gov.au/understanding/ndis-and-other-government-services/education). While we understand that this was probably intentional to ensure flexibility for individual cases, our experience has been that both schools and NDIS Local Area Coordinators and planners often interpret these guidelines to mean that it is not appropriate to provide any behaviour support within school settings. This represents a significant barrier for this group of autistic students because best practice guidelines indicate that consistency across environments is a key element to successful support (relevant to term of reference D). But this consistency is not able to be achieved if a behaviour specialist is unable to work across both the home and school environments. The quote below provides an example of why it is so important for behaviour specialists to work across both environments.

It has been a professional pleasure to deal with Sarah Wood from Learning for Life Autism Centre. Sarah has worked collaboratively not only with myself, but the Departments Student Support Services, teachers, students and most effectively with parents, who are often at their own unique stage of grief, and can be quite delicate to deal with. As Sarah is an Educational and Developmental Psychologist, she is able to specialise in complex cases to assist all parties in supporting students at risk, with great success. As students with Autism can be violent and display quite anti-social behaviour, funding at times can be tricky to allocate for necessary time fractions. Through NDIS or private funding, Learning for Life Autism Centre, has an opportunity to work more frequently with students and importantly their families to ensure home school consistencies which is essential for the young person’s success.

Assistant Principal

Primary School

To that end, while members of this group of autistic students are often eligible for NDIS funding, the professionals working with them find their clinical recommendations constricted by the regulations around funding. If they do choose to provide support within a school setting, they then find themselves having to write lengthy reports to justify that decision. Similar to the PSD funding applications under the category of ‘severe behaviour disorder’, this takes time and detracts from time that the professional could otherwise dedicate to improving the autistic student’s skills.

The other new NDIS initiative relevant to this profile of autistic students is the advent in July 2019 of the NDIS Quality and Safeguard Commission which monitors the use of restrictive practices. Such practices are too readily used with this group of autistic students. This was accompanied by a change whereby NDIS funding for behaviour support can now only be

accessed by professionals who are registered with the NDIS. While L4L believes this will bring about long term positive change, the registration process is onerous and takes time to work through. So much so, that some professionals have decided not to register with the NDIS and to instead stop providing services to this group of autistic students. In the short term, this change has made it more difficult for these autistic students to access services because there are now more limited numbers of professionals who are available to work with them.

It is clear that the NDIS has made many positive steps towards supporting this group of autistic people. However, a significant number of younger autistic students with this profile are being excluded as they do not yet meet the NDIS definition of a ‘complex client.”

F. The interaction between services provided by the Commonwealth, state and local governments.

The response to H) iii. above demonstrates a gap that occurs for this profile of autistic students in the interaction of Commonwealth funding through the NDIS and state funding through the Department of Education’s Program for Students with a Disability.

The other Commonwealth-provided funding that this group of autistic students may be eligible for, if they meet diagnostic criteria for a Conduct Disorder, is Medicare rebates through a Mental Health Care Plan. A requirement of services provided under a mental health care plan is, however, that the autistic student is present for the session, i.e. it is not possible to conduct a session with the parent or a teacher instead of the autistic student. The difficulty with this, is that autistic students typically do not respond to traditional counselling sessions. The evidence demonstrates that autistic students tend to respond better to the behaviour-based interventions as outlined on page 3. While it is likely that this particular group of autistic students do have the language skills to engage in counselling (unlike many other autistic students), they are typically not in the required ‘stages of change’ level that would enable counselling to be effective. A basic premise of counselling is that there are five stages of change with the first stages involving recognition of a problem and acknowledgement that change is needed. In the case of this group of autistic students these stages would require the student to recognise and acknowledge that some of their behaviours of concern are not appropriate and that they need to learn to engage in alternative, more prosocial behaviours. However, this is often extremely difficult for them to recognise because a core deficit that many autistic people experience is an inability to understand other people’s perspectives. Consequently, the group of autistic students we are discussing in this submission often require many years of behaviour-based intervention before they may reach a stage where they can engage in the more traditional counselling that is funded through a mental health care plan. As a result, the funding available through Medicare is typically not suitable for this group of autistic students.

We are lucky in Australia to have a range of possible services provided by the Commonwealth and State governments to help support autistic students. The reality, however,

is that autistic students whose primary difficulty is that they engage in a high rate of behaviours of concern regularly fall through the gap of these services. They often only become eligible for funding once their behaviours of concern reach a point that they come into contact with other government agencies, such as the justice system. For professionals trying to prevent autistic students’ difficulties reaching that point, much time is spent trying to identify appropriate funding options, writing reports to support funding applications and working out how best practice strategies can be provided within the boundaries of particular funding models. All of this takes away from time the professional could be spending engaging with the autistic student and their parents and teachers.

Recommendations

Intervention Recommendations

As outlined on page 3 we believe that behaviour-based interventions are at the core of adequate and appropriate services for this group of autistic children. Best practice indicates that behaviour-based interventions should be delivered within the autistic child’s everyday environments. This requires the behaviour specialist conducting regular observations within the school and home environment. However, a number of barriers mean that this type of service is not standard for this group of autistic students. We believe the recommendations below would help to reduce these barriers.

Key stakeholders such as school leaders, Student Support Service Officers (SSSO), NDIS planners and support coordinators need training to understand that behaviour based interventions involve the observation of students within their everyday environments such as at home and at school. Then it is the adults around the child (e.g. parents, teachers and education support staff) who are taught to implement proactive and reactive behaviour management strategies on a daily basis.

As part of this training it is also important to acknowledge that these types of behaviour-based interventions need to be delivered by experienced ‘behaviour specialists’. While a registry for professionals considered to be ‘behaviour specialists’ is currently not available in Australia, the best guidelines to follow are to find an allied health professional (psychologist, occupational therapist, social worker, board certified behaviour analyst, etc.) who can demonstrate experience working with this group of autistic students. The key here is the ‘experience’ element which means it is important to understand that within school settings the SSSO staff are unlikely to have the required level of experience to know how to support this group of autistic students. Additionally, the time constraints they are typically under means they often don’t have the availability to provide behaviour-based interventions. This leads to recommendation 2 below.

It would be beneficial if the Department of Education in Victoria could acknowledge that external professionals may sometimes be required to support children with

complex needs such as the group of autistic students we are discussing in this submission. Currently the Victorian Department of Education has guidelines that discourage schools from allowing external professionals to support students within the school setting. The challenging environments that often surround this particular group of autistic students can mean schools are hesitant to allow external staff to conduct observations and they fall back on the departmental guidelines. While it is completely understandable why these guidelines have been developed, a caveat is required to acknowledge that a certain group of students sometimes requires more specialist support than can’t be offered by staff employed through the Department of Education. Additionally, even if SSSO staff were experienced enough to support this group of autistic students, they would not be in a position to work with the families to ensure the required consistency of strategies across all of the student’s regular environments. One possible solution is that the Department of Education could compile a register of ‘experienced behaviour specialists’ within different regions that they feel have demonstrated an understanding of departmental policies and are able to work collaboratively with school staff.

The education support staff members within schools require more training and the important role they could play with this group of autistic students’ needs to be better understood. Unfortunately, these staff members often seem to be viewed as just an extra set of hands to play with and supervise these autistic students. The value they could provide in supporting these autistic students is often overlooked. In the world of early intervention for autistic children, therapists aiding within kindergartens are often told that their role is to work themselves out of a job. In other words, it is their job to apply the behaviour-based strategies consistently in order to teach the child to become as independent as possible. As such these aides receive a lot of on the job coaching so that they understand how to do things like fade level of assistance and slowly increase expectations. The role of the education support staff at schools could be viewed with the same mindset. They could play a crucial role in supporting these autistic students to learn to engage in more prosocial behaviours. And considering these autistic students’ average language and cognitive abilities it is not unrealistic to think that with adequate support provided as early as possible, they can reach a point where they can engage independently within the classroom. However, this would require the education support staff receiving some basic theory training in behaviour interventions and then receiving regular coaching in relation to the individual students they support. This process is often built into L4L’s school behaviour support program with the coaching and modelling provided during the regular school observations. This is a type of service and training that any ‘experienced behaviour specialist’ would be able to incorporate into their role as it is standard practice in the early intervention field. We have seen at L4L that with this type of behaviour intervention many of these autistic students have gone on to make extremely significant gains in all areas of their lives.

Funding Recommendations

In relation to the funding barriers that currently make the delivery of behaviour-based interventions difficult, we believe that the basic funding structures available to autistic children are relatively adequate. We believe the focus needs to be on what guidelines can be built into the existing funding models to ensure that this profile of autistic students can receive appropriate supports as early as possible. Some suggestions of how to achieve this are provided below:

As a Medicare Mental Health Care Plan is the quickest and easiest of the funding options to organise, perhaps guidelines could be built in that behaviour-based services which primarily involve observations of the child at school and home alongside meetings with teachers and parents can be provided under Medicare.
An ‘emergency funding’ category could be built into the Department of Education’s program for students with a disability to allow schools to access short-term funding to support this group of autistic students. While L4L’s experience indicates that this type of funding is sometimes provided in extreme cases, it has not been a transparent process. The cases where this funding has transpired have been situations where children have been expelled from a school and families have raised the possibility of seeking legal advice and/or made formal complaints to the Department of Education. Obviously, such escalations are not beneficial for anyone involved, least of all the autistic student. Making some type of ‘emergency funding’ available for a period such as a year would allow schools to provide these autistic students additional support in the form of an education support member in the classroom.

The reason we suggest this type of emergency funding, rather than making it easier for these autistic students to access existing PSD funding, is because our evidence demonstrates that with really targeted supports for a period of about a year, many of these autistic students can make significant gains. For example, last year one of L4L’s clients was absconding from the classroom three to seven times a day across Term 2 and required around five staff members searching the school grounds to locate him. With regular support from one of L4L’s behaviour consultants and the implementation of an individualised positive behaviour support plan, progress was quickly made. By Term 4 the student was no longer absconding at all and was also engaging in his school work. These types of quick, positive outcomes are not possible, however, unless funding is available to provide a suitably trained education support staff person to be in the classroom regularly. This funding also needs to be able to be accessed as quickly as possible following the recommendation from a behaviour specialist. Our recommendation is that this type of ‘emergency funding’ is made available to fund things like an educational support staff member. While suggestion 3 below should also be implemented to ensure the design of appropriate behaviour-based interventions.

A caveat should be built into NDIS funding guidelines to acknowledge and allow some funding to be used for behaviour-based interventions within school settings.

Note that this is specifically for ‘behaviour-based services’ that involve observations and modelling of strategies within the classroom environment. It is not recommended that this type of funding be applied to removing the child from the classroom for counselling sessions.

These autistic students often have unused NDIS funds at the time their plan comes up for its regular review. As was outlined on page 8, there are currently limited professionals who work with this group of autistic students and it often takes families many months to identify an appropriate professional, who might then have a wait list. This can lead to a Catch 22: when the NDIS review comes up, families often find themselves being told that the fact they haven’t used the funding indicates they don’t need it and that they will receive less in the next round. Additionally, if some of the NDIS funds have been used to fund behaviour-based interventions within the school setting, families are often told that this is not appropriate, despite having reports from professionals explaining the clinical reasoning for this. One solution to this may be to allow families in this situation to roll their funding over and keep it for an additional period of time, e.g. three months or six months, thus delaying their review until most of the funds have been spent.

We hope that we have highlighted the existing gaps in the support available to a group of autistic students whose primary difficulty is that they frequently engage in behaviours of concern that include physical behaviours directed towards self, others and the environment. Importantly, however, we also hope we have demonstrated how capable this group of autistic students are of learning to engage in more prosocial behaviours and becoming welcomed members of their communities if they received behaviour-based services as early as possible.

Thank you for taking the time to read this submission. Please don’t hesitate to get in contact with Sarah Wood, Educational and Developmental psychologist or Emma Miller,

Clinical Director via                              or                              or

by phone on to discuss any of the information provided in this submission.