Submission 93 — South Gippsland Autism Action Group — Inquiry into services for people with Autism Spectrum Disorder

Submission

No 93

INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM

DISORDER

Organisation: South Gippsland Autism Action Group

Date Received: 21 April 2016

Submission S093 Received 21/04/2016 Family and Community Development Committee

SOUTH GIPPSLAND AUTISM ACTION GROUP (SGAAG)

‘,. Because IQ doesn’t determine the level of Autism… or the supports required.’

INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM DISORDER

SUBMISSION

TO THE FAMILY AND COMMUNITY DEVELOPMENT COMMITTEE

CORRESPONDENCE c/o-

Jacinta Cooke (co-founding Member SGAAG)

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Please find below a synopsis of ideas that have been formulated in consultation with parents and carers of primary school aged children with a diagnosis of Autism (most of whom have dual or multiple diagnoses including mental health disorders) in the South Gippsland, Bass Coast and Latrobe Regions. These ideas have been formulated with support from local Specialist School professionals in the South Gippsland and Bass Coast Shires in an ongoing capacity, and discussed with the Hon. Tim Bull (Shadow Minister for Disability and Mental Health), Mr. Bernie Finn (Shadow Parliamentary Secretary for Autism Spectrum Disorder), and MP Ms. Melina Bath (Member for Eastern Victoria) on October 13™ 2015, and MP Mr. Danny O’Brien (Member for Gippsland South) on 15™ December 2015. Letters were forwarded to the Hon. Jenny Mikakos and the Hon. James Merlino, resulting in an invitation to discuss our concerns and proposals with Nicola Stuart, Tracey Walker and Jane Mersey from the Department of Education and Early Childhood Development on 2™* March 2016.

21/04/16

This submission outlines some of our struggles and suggestions as families living with Autism. In particular, it refers to: b) the availability and adequacy of services provided by the Commonwealth, State and local governments across health, education and disability services in rural Victoria; d) evidence of the social and economic cost of failing to provide adequate services; and, e) the projected demand for services in the South Gippsland and Bass Coast Shires of Victoria.

B) The availability and adequacy of services provided by the Commonwealth, State and local governments across health, education and disability services in rural Victoria.

Education- Primary/ Specialist Schooling

Currently there is real concern for students and their families living with Autism who do not meet the current guidelines for access to specialist school settings, and who may or may not receive PSD funding in State and/ or Independent school settings. Please find listed below the main problems and subsequent proposals for change required to support these children and their families.

1. Problem: Students with a diagnosis of Autism and an IQ of over 70 cannot attend the specialist school setting, regardless of their level of Autism or any co-morbid conditions (eg. SBD/ ADHD/ OCD); Difficulty in securing a specialist school placement when students with Autism and high IQs also have a Severe Behaviour Disorder (SBD) diagnosis.

Solution: Provide access for these students to specialist school settings (without exorbitant application processes), so that they can develop the social skills they need and receive quality therapy based programming to support their regular mainstream Primary or Secondary school attendance (assuming mainstream schooling is still a viable, safe and supportive option for them. Please refer Proposal #5). Access can be achieved by removing the IQ score barrier and providing Principals and Allied Health staff with the professional empowerment to make suitable, local level decisions for applying students. The criteria to access specialist settings also need to be altered so that having a dual diagnosis of SBD and Autism does not discriminate against students with Autism. Access would need to include recognized funding for the specialist school they will attend, and this could be supported in part by the Learning Support Program (LSP) funding to provide social skills, Speech and Occupational Therapy based classes as required by the accessing student cohorts, and parental contributions from their Carer Allowance if so needed. Support would also need to include the opportunity for more than one-year enrolments for current or future discretionary placed students. Supports may take various forms of access depending on the recognized needs of students (and their families) in the area, and it would be best if these decisions could also be determined locally.

Outcomes:

a) Safe and supportive education for students with Autism. b) Some parents are currently in desperate situations with their children and have nowhere else to turn for support as current schooling arrangements stand. Those families who are able have even moved intra and inter-state to seek the support they desperately need. This is not an option for everyone, nor should it have to be. This change would provide security and support for everyone involved, and reduce the mental health toll on families and the limited professional support services available in rural areas.

c) Reduced burn-out  for mainstream teachers and support  staff by care sharing, and providing

opportunities for point of need Professional Development utilizing a ‘Wraparound Kids’ holistic structure for providing multidisciplinary collaboration and reporting1.

2.  Problem:  Specialist Schools underutilized for Professional Development (PD) and support by local

schools due to resourcing constraints.

Solution: Local clusters of schools could allocate some of their LSP Funding, or other fiscal resources,

towards  specific  Specialist School PD. The Government could fund  Specialist Schools towards

developing and maintaining PD and special needs support to the local school cluster.

Outcomes:

a) Specialist School staff can be released into local schools to provide PD in essential and innovative ways, and for mainstream staff to attend Specialist Schools to see what works and why so that these practices can be considered and implemented in individualized ways that are meaningful and supportive for the student. In particular, supports and resources that are vital for developing an Individual Education Plan (IEP) that is SMART, truly collaborative, inclusive, and seen as a living and working document. Similar models where a Hub school provides expertise to local schools are already utilized in other States, eg. QLD & TAS.

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b) It would also provide mainstream staff with direct and immediate access to paraprofessionals that work in the field on a daily basis, negating the often lengthy and indirect process of support via phone to regional support offices. Ideally, this would also begin to change the way that Education Support Staff (ESS) are viewed and utilized within schools, so that the classroom teachers will work 1:1 with our students, rather than ES staff being expected to plan for and provide educational experiences and behaviour management options instead.

3. Problem: Specialist schools not identified as Professional Development centres by universities to support Teacher Training courses and student-teacher placements.

Solution: Universities need to be encouraged/ required to broaden current teaching placement practices and ensure that placements include Specialist School settings.

Outcomes:

a)  This would  strengthen  the  relationship between mainstream and  specialist  settings because

beginning teachers will have seen firsthand how pedagogy and the differentiation of teaching and learning practice can be implemented effectively. It would break down barriers and develop dialogue between educators and paraprofessionals such as Allied Health support staff. Currently, mainstream teachers have little ongoing contact with the professionals that submit the student PSD applications once completed. Teachers with an awareness of what these support roles have to offer will be more inclined to engage in ongoing dialogue with these invaluable support personnel and implement programs that have been created together. Specific individualized interventions and resources can be applied and evaluated through a real IEP process, rather than teachers attempting interventions without support or knowledge of best practice.

b) This would also go a long way towards reducing the high level of teacher and ESS burnout. Our group is aware of one ES requiring OH&S stress leave intervention last year because adequate supports and training were not made available. However, we are acutely aware this is an ongoing and recurrent problem that is not satisfactorily addressed or reported on, as staff often utilize all of their sick days and take time off without pay in an attempt to manage. The ripple effect then sees students experiencing more anxiety due to replacement staff changes, whilst more stress is placed on the remaining or replacement staff, and schools are required to foot the bill for staff absenteeism resulting in less fiscal resources to support worthwhile planned activities and excursions where extra staff support would be extremely beneficial. Being proactive is better for everyone in this regard.

4.  Problem:  The immense lack of knowledge and understanding of Autism and a range of other

disabilities in Independent School settings is causing significant harm due to children’s needs not being met. The apparent lack of accountability to Government about their student welfare policies and actual practices and their curriculum based decision-making and implementation of student IEPs and SSGs.

Solution: An urgent review into Independent schools and their implementation of supports for Students with Additional Needs (SWANS). Where there is not a recognized staff member with an appropriate Special Educational Needs Masters Degree or equivalent at said school, the school community will benefit immensely from employing one, or outsourcing to their local Specialist School to ensure these students are supported compassionately and appropriately. This would also increase accountability and inclusive dialogue. The development of evidence-based welfare practices need to be implemented to ensure students are not only cared for, but also given opportunities to grow and develop their current capacity for building resilience and social-emotional skills in a deliberate, evidence-based, and monitored way. It would be a great step forward if the Government could also provide in their ‘Strengthening Regional Support Program/ Improving Student Educational Outcomes Program’, ongoing support and accountability 4

measures to Independent Schools within their regional care as well, by the continued and increased funding and numbers of Autism Support/ Consultant Teachers.

Outcomes:

a) Students and families less likely to be ‘encouraged’ to attend other schools (assuming there are even other options), with truly equitable, caring, and professional support options offered and

implemented, without the need for families to have to fight to have their child’s basic rights delivered, or feel their only option is to move intra or interstate. It is difficult enough living with disability daily and nightly, without having to negotiate schools that have limited understanding of what is required or the capacity to support our children with additional needs, or even maintain basic safe boundaries, eg. Staff support and supervision during recess and lunch breaks; obvious and consistent rules and consequences; and, adequate fencing.

b) This would go a long way towards reducing family stress and breakdown. c) Professional Development delivered at point of need within the school for teachers without having to utilize other fiscal resources as PD on hand daily.

5. Problem: Current schooling situations dangerous, particularly for Middle and Senior Years students. Solution: The creation of Modified Autism Specific Schools throughout Gippsland and beyond that cater specifically for Autistic students with IQs over 70 who would be deemed ‘at risk’ in current settings, either due to the potential for developing mental health or severe behavioural disorders. These would best be set-up in partnership with the local specialist schools, so that they can provide expertise and support as required. ‘EdSpace’ in Benalla is one such schooling model that could be used as a pilot school to guide and support the rollout of similar schooling options. EdSpace has been made available for any student who requires an alternative setting to succeed educationally and emotionally, by providing a range of pathways into study, employment and other post-school options. One of the main features that have made this school and their students so successful has been the implementation of the ‘Wrap Around Kids’2 program. It is an integral component that supports the child, their family, teacher and paraprofessionals with a shared and confidential communication framework upon which to base collaborative decision-making. The EdSpace model goes beyond an ‘annexe’ that is attached to a school or education precinct where students can just go and retreat- that is not true inclusion or support. The model needs to be considered more in terms of a ‘Meeting Place’ or a ‘Confluence’ where multiple ideas, supports, staff, practices and engagement in multi-modal learning takes place. This new model of schooling could be paired with and similar in scope to the Queensland Autism Hub3 project, but provides students with attendance at the hub.

Outcomes:

a) Students and families have access to a safe and supportive educational environment that is created in true collaboration with critical parties.

b) Real opportunities for students to access the curriculum in individually modified pathways. c) Reduction of mental health issues for students and their families. d) Reduction of reliance on Respite programs for support. e) Reduction in costs for families who currently have to access professional support services privately. B) cont. Education- Secondary Schooling Please find below concerns that were raised in relation to considering secondary schooling and post-school options in our area, but which we believe would constitute broad concerns for all ASD families who do not access ASD specific or specialist schooling options.

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• At primary level, there are usually several perceived (if not realistic) options for students on the

spectrum. However at secondary level, options are drastically reduced. There may only be one or two secondary schools within the area, without having to travel significant distances to access a more suitable one. Students on the spectrum are also less inclined to be able to manage bus transits safely (eg. Sensory issues, lack of suitable supervision, absconding, capacity for dealing with social or logistical problems which may arise, bullying etc.), which then puts the onus back on families having to negotiate, organise and pay more for transport. This is also logistically more challenging for families who have more than one child, let alone families with multiple children with varying degrees of disability or disorder. One school may suit one child, but not their siblings, creating further logistical nightmares for families, not to mention the ongoing separation for inclusion socially, entrenching the gap and isolation between typical and atypical children and their families. Also, the option for car-pooling is also fraught with problems similar to bussing options, although potentially more dangerous.

• Schools that may be better suited to our children’s’ needs, as well as being further away, may also be private, further increasing the cost of schooling and the stress involved with trying to meet those financial responsibilities on households that are already earning less than their typical peers, or having less money to use on other things because the ongoing costs associated with having a child with ASD and the therapies/ medicines required to potentially improve socialization, behaviour, mental health, and or daily living skills is constant and draining (Please refer Appendix 1- Section D Costing Case Study).

• Secondary schools are particularly challenging for all adolescents, and this is even more amplified for students on the spectrum. Please consider the following items as a beginning guide for identifying hazards: Bullying tactics can increase and be more insidious and hard to identify and negotiate, impacting mental health and mental health disorders (NB. the researched area of depression and suicidal tendencies for those with ASD); Pubertal changes affect medications, socialization capability, mood and behaviour; Secondary school building and classroom structures make it even more challenging with various sensory inputs which may be hard to remove; Curriculum delivery, session time constraints, private study sessions not supported, multiple teachers and support staff in multiple classroom settings require the ability to navigate changes and transitions independently and seamlessly but which is one of the main ASD deficits; Reduced opportunities for suitable withdrawal options and generally limited or no supervised focus activities provided during break times; Compulsory subjects which may no longer

  even be attainable or have any value for the student; Options for learning life skills are almost

completely compromised in the secondary setting; Possibilities for streaming up or down are limited and create further stigma.

• Post-school options: Families are currently unaware of what real options there may or may not be available to their children. The ability to even begin to comprehend what this may look like for them as parents and providers and for their children’s futures, is almost too huge to even consider. It is extremely difficult even negating daily or moment-by-moment support decisions, let alone having to confront the looming issue of post-school care and what this may look like. More questions and exasperations than suggestions are put forward, including- ‘I can’t work and I can’t retire!’

B) cont. Disability & Health- Access, response and information about ASD supports within the disability and health sectors have been quite variable for each family. However, common experiences and challenges have been listed.

• Time consuming and frustrating: Familial efforts to find out ‘what is wrong or different’ about my child have resulted in an overwhelming lack of knowledge and support from rural health services, ranging

  from Maternal Health Services, General Practitioners, Pediatricians, Emergency Hospital Staff,

Psychologists, Speech and Occupational Therapists, and the administrative staff utilized within these services. Overall, the resounding chorus has been that it has been a fight and a struggle for families to have their children diagnosed accurately with ASD, let alone without the value judgments placed on parenting and home life from these professionals. Whilst some of this struggle for diagnosis can be 6

attributed to the spectrum variability of ASD, most of it came down to limited knowledge of health workers to 1) recognize ASD, and 2) know what steps to take in order to provide families with the best knowledge, supports, and government resource pathways to provide intervention, care and respite services.

• Inequitable service access: One of the most dominant observations has been the inequitable access to services based on locality and service provider expertise and professionalism. Depending upon your postcode or shire boundary, you can or cannot be eligible to access various support services, such as respite. Eg. If you live in South Gippsland shire like Leongatha, you can have some respite options for your child because the Disability Provider did their homework and applied for funding to provide this. Whereas, if you live in Inverloch straddling the border between South Gippsland and Bass Coast shires, you cannot access this respite, even though your need may be substantially greater than someone else. At this stage, it is unknown how the NDIS will support equitable arrangements in the future, and are hoping that these inequities will be rectified.

• Consultation Waiting Lists: Wait times for access to health services and early intervention have also been extremely variable. For some it has meant waiting up to 12 months to have contact from their referred Early Intervention provider to begin early intervention. The actual intervention from employed therapists and case workers varied greatly as well, with some being exceptional and informative and supportive, whilst others even from the same organization were less so, and left families having to do all the legwork and research in order to have the same opportunities and knowledge granted. Some intervention visits were scheduled every second or third week, whilst others did not have visits for months even after specific requests for help. Families found that they needed to travel considerable distances, pay considerable consultation fees (eg. $395- for a 45minute visit), and wait considerable lengths of time for appointments with specialists (after other Pediatric reviews had been undertaken and waited for) that had been referred as appropriate and knowledgeable, rather than just accessing those closest (still an hour’s travel) with less of a wait available (still up to 6 months), and whom often asked parents for beneficial information rather than

  providing it. It was obvious to all that at the GP level in particular, there was a massive void of

knowledge about ASD, and the supports and resources that could be provided by local, state or federal Government and non-government services and providers. It had also been noted that there is a 6 month waiting list to access the Pediatrician, and it was not uncommon for there to be cancellations up to the day prior to scheduled consult, with the only possibility of a rescheduled appointment in a further 4 months’ time, and this was as an emergency listing due to immediate medication induced psychosis. It appears that if you have a child with an ‘invisible’ or ‘problematic’ mental health issue or behavioural disorder emergency, that there is nowhere to turn, as Emergency and on call staff are not equipped to deal with our children. Nor would it seem, are the Community, Child and Mental Health Service, whom after contacting numerous times for support, have been unable to adequately support children and families in crisis and have in fact told families that ‘they have done all that they can do for them’. This leaves vulnerable people in a position with nowhere left to turn, and it is an extremely frightening and debilitating place to be in.

• Respite Options: Variable, inconsistent and at times concerning. It is unknown what level of training is required and what ongoing staff supervision and accountability factors are in place for those providing respite options for our children. Reports that have come back from parents are very concerning due to problems around lack of forethought when planning outings and adequate risk assessments and controls put in place before activities are undertaken. If this is done, it is not communicated to families accessing the respite service.

D) Evidence of the social and economic cost of failing to provide adequate services As can be seen by previous comments, ASD imposes many challenges for families, namely, but not limited to:

• Inadequate access and provision of quality education options; 7

• Lack of equitable resource and support provision across geographical boundaries;

• Increased financial costs to families due to medication, special equipment and resources, counseling, various health/ disorder related appointment fees and transport costs, as well as increased absenteeism from work, if able to work at all;

• Constant fatigue due to lack of sleep and the need to always be vigilant and ‘on call’ to provide assistance or withdraw the child from education, health care professional and/or respite provision services (eg. Camps/ Excursions, modified schooling times, professionals not prepared to work 1:1, Concerned that Respite care staffing and implementation is not adequate and could result in further harm or trauma):

• Breakdown of family relationships and social networks;

• Limited or no respite options available, either formally or informally through social and familial networks;

• Navigating the maze, continually; and

• Managing appointments and therapy schedules. In addition to the suggestions previously listed, ideally SGAAG would like to see in the immediate future:

• Purpose built ASD schools that cater for students on the spectrum regardless of IQ, which could be annexed next to or branched out from existing specialist schools across the state;

• The implementation of the ‘Wrap-around Kids’ facilitation model to be utilized across all government and non-government sectors working with people on the spectrum;

• Quality Health hubs within each region that combine highly trained and versed professionals in child and adolescent ASD and Mental Health, combining paraprofessionals and resource distribution and networking from the one place:

• Consistent and equitable resource provision and accountability to government by service providers;

• Automatic Companion Card provision for a nominated family member when a child is diagnosed with ASD, rather than more forms to fill out:

• Provision of a Travelling Teacher Service to provide support and resources at home and in the local community in an ongoing consultative capacity- the most ideal, point of need service provision yet!

If the Inquiry would like to view first-hand comments from SGAAG members, or to access the link to our petition to gain ASD specific schooling options, please visit: https://www.facebook.com/SouthGippslandAutismActionGroup/

SGAAG thanks you for the opportunity to contribute to the Inquiry and looks forward to receiving updates regarding its progress.

On Behalf of All Local Families living with children who have ASD with IQs over 70

South Gippsland Autism Action Group

-Founding Members

Jacinta Cooke (B. Education- Primary, Master of Special Educational Needs, & Parent of Child with ASD &

Severe Language Disorder)

Tona O’Connor (Parent of Child with ASD, ADHD, OCD, Anxiety, & Severe Behaviour Disorder)

Michelle Hackett (B. Education- Secondary, & Parent of Gifted Child with Asperger’s)

Natalie Owens (B. Early Childhood/Primary, & Parent of 2 children on the Spectrum)

c/o- Jacinta Cooke

—_eo

Appendix 1- Section D Costing Case Study

Costs from time of diagnosis at 3 years old for one child (as this family has 2 children on the spectrum, whilst another local family has four).

Pediatrician: After Medicare rebate $150 a visit. Out of pocket $2,500.

Travelling teacher: $240 for 1 hour. (Although C showed great improvements with this teacher who used ABA therapy, we could not afford to keep doing it) 1 year: Approx $12,000.

Speech Pathologist $120 a fortnight. Approx: $16,000 over 7 years

Occupational Therapist: $160 a fortnight (and travel to Melbourne for OT that specialises in Autism) Approx: $25,000

Psychologist: $160 a fortnight (care plan does cover part of those costs for 10 sessions a year) Travel to

Melbourne. Approx $25,000

Social skills group: Over past two years: $375 a term; $3000

Family counseling: $200 a month over 4 years: Approx $10,000

IQ testing: nearly $1000 out of pocket. (Now that he is nearing high school, this needs to be done again to ensure continued funding.)

Books and information, parenting courses, autism conferences etc: approx. $7,000 over 7 years.

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Medication: Approx $100 per year Resource Purcahses: ??

Loss of wages due to my husband or myself having to leave work to pick him up when school cannot cope with him anymore, or to take a day off to keep him home as we can see he won’t cope that day, or school have asked us to keep him home. Loss of wages to take time off for all the therapies?? It’s a vicious circle of mother needing to be available at all times when C is at school, but also having to work to pay for various therapies. I have no idea how to quantify how much wages we have lost over the years.

1 http://www.edspace.org.au/#!how‐edspace‐runs/c229m 2013, EdSpace Education and Training Centre, Capability Building Inc.

2 http://wraparoundkids.com/pages/what is.htm 2003, Foster, J., Fostering Partnerships Pty Ltd.

3 http://education.qld.gov.au/autismhub/docs/autism‐hub‐fact‐sheet.pdf 2016, Department of Education and

Training, Queensland Government

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