NDIA Accountability Project

Submission 41 — South Burnett CTC — Inquiry into the Thriving Kids initiative

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Thriving Kids Initiative Submission for Terms of Reference

Submitted By:

Company Name: South Burnett CTC
Program Name: RENEW Early Years Service
Address: redacted: s22 - address details
Contact Person: redacted: s47F - personal name
Phone: redacted: s22 - phone number
Email: redacted: s22 - email address

Evidence-based information and resources that could assist parents identify if their child has mild to moderate development delay and support parents to provide support to these children.

Evidence-based information and resources that can assist parents to identify if their child have mild to moderate development delay’s is difficult for parents to access, especially for those families in rural and low socio-economic areas (Australian Bureau of Statistics. 2021; Hampton & Rodriuez. 2021). Many families don’t have access to internet services and/or are not able to afford such luxuries. Quite often families isolate themselves because they are embarrassed by the differences of their child and the difficult behaviours that are displayed when accessing community services, events and going shopping (Fletcher-Randle, 2022; Rogers et al., 2017). The strategies that work best for children displaying autistic characteristics aren’t commonly known or used within rural communities (Fletcher-Randle, 2022; Hampton et al., 2024; McDonnell & DeLucia, 2021). Accessing general health practitioners such as doctors and health nurse facilities are incredibly difficult due to insufficient availability. Some rural areas don’t have enough doctors to support the community so therefore low socio-economic families without a doctor to discuss developmental delays with or get access for a paediatrician referral. Families on low incomes experience further barriers to accessing primary health care due to cost. Parents experiencing socio-economic disadvantage may have intellectual differences or display characteristics of autism themselves. They may not recognise that their children need further assistance or have the ability to put those practices into action by themselves (Bent et al. 2020; Snijder et al., 2022). Therefore, it is of upmost importance that there are services developed that offer expert in-home support to help implement strategies for concerning behaviours, inform and educate families on identifying characteristics of autism or developmental delays and offer training in assisting the family to know how to change behaviours, set routines, as these are easy to implement once they are taught how.

There are different evidence-based (Steinbrenner et al., 2020), strength-based (Pellicano & den Houting. 2022; Russell et al., 2019; Grant & Kara. 2021), holistic approaches that can be used to assist practitioners in ensuring that families build inter-relationships between family members and offer extensive information and strategies to help parents to understand developmental differences, to advocate for their children to build a multidisciplinary approach and collaboration to ensure that children are well supported (Burrell & Borrego. 2012; Dugdale et al., 2021; Gerrad et al., 2021; Spencer et al., 2012; Vicek et al., 2021). These are listed below:

  1. National Framework for assessing children’s functional strengths and support in Australia (Fitzpatrick et al., 2024) that is available on the Autism CRC website; this has been researched and developed for First Nations people and considers their cultural needs and offers a comprehensive view of different strategies that can be used to assist First Nations families. The framework bases the assistance around body structure, activity, forming friendships, family and personal differences. There is a National Guideline for supporting the learning, participation and wellbeing of autistic children and their families in Australia (Trembath et al., 2022). These frameworks provide information for how services can best engage and facilitate the needs of families and individuals that have developmental differences.
  2. Ages and Stages Questionnaires are used as a preassessment to Autism (Becerra-Culqui et al., 2018) and come in three different categories which are ASQ-3 (Squires et al., 2009), ASQ:SE-2 (Squires et al., 2015) and ASQ-TRAK which is the ASQ-3 redesigned for First

Nations families (Squires & Bricker. 2017). ASQ3 only provides developmental questionnaires for children to the age of 5.5 years/66 months, ASQ:SE-2 provides the developmental questionnaires for children to the age of 6 years/72 months, and the ASQ3-TRACK has developmental questionnaires for children aged to 4 years/50 months. When children are older than specified in the questionnaires but have significant delays the Ages and Stages can be used as a guide for how delayed the child specifically is. The Ages and Stages Questionnaires do need to be implemented by a practitioner that has a well-established understanding of children’s development, especially when it comes to assessing the questionnaires. The Ages & Stages Questionnaires are also used by paediatrician’s, Allied Health Professionals and Child Development Service to monitor the developmental differences of children. Autism diagnosis quite often needs a history of differences to be able to come to a diagnosis which these questionnaires can also provide.

  1. Steinbrenner et al., (2020) provides insight to 28 evidenced-based strategies that have been scientifically proven to assist autistic people with interventions that can assist in improving behaviours of concern, assist autistic people that are non-verbal and help to teach social cues, and social communication. These strategies can also assist with routines and especially useful in school, as well as early education facilities. Some of these strategies have to be delivered in a specific way to be effective and there needs to be adaptions made as each autistic individual is unique and has their own individual differences. Steinbrenner et al., (2020) offers a comprehensive guide on the age of the person that is suitable for that intervention as well as what developmental areas each intervention is used for.

There are many different interventions available for parents who have children with developmental differences and not all of them are evidence-based and have research to ensure that they are validated. Navigating this pool of information can be time consuming and intimidating for parents, and at times they don’t have the ability to identify if the intervention could bring harm to the child or family. These are skills that need to be taught on how to investigate interventions to determine the benefits and risks to ensure that the family is making an informed choice for their child.

Traditional parenting programs such as 123 Magic, Triple P, and Circle of Security have been shown to not be successful as they are based on getting autistic children to regulate their emotions in a typical way (Dugdale et al., 2021; Pohl et al., 2020). Autistic people and children may not experience emotions in a typical way or identify them in the same way, so how would these parenting programs assist them (American Psychiatric Associations. 2013). Furthermore, where parents have differences themselves and struggle to regulate their own emotions, they can struggle to assist a child with developmental differences and some with co-occurring intellectual differences to do the same (American Psychiatric Association. 2013; Dugdale et al., 2021).

Children above the age of six don’t really have any form of developmental checklist that can assist with identifying developmental differences. There are however assessments that offer between 89% to 98% accuracy in identifying autism but need to be implemented by a clinical psychologist or a person who has pertained a Master’s degree in a relevant field. These assessments are:

  • Autism Diagnostic Observation Scale – 2nd edition (ADOS-2)
  • Childhood Autism Rating Scale – 2nd edition (CARS)
  • Autism Diagnostic Interviews, Revised (ADI-R)

Examine the effectiveness of current and previous programs and initiatives that identify children with development delay, autism or both with mild to moderate support needs and support them and their families. This should focus on community and mainstream engagement, and include child and maternal health, primary care, allied health playgroups, early childhood education and care and schools

The effectiveness of most current programs when it comes to supporting families with children that have development differences is minimal especially when it moves past typical developmental concerns to the more complex behaviours of concern. This extends to Health Nurses, paediatricians, allied health services and the child development service who put off appointments and give parents false information about when children can be diagnosed. Evidence shows that the first 5 years of the child’s life is most important and that is when children learn the most and develop pathways in the brain that lay the foundations for all future information that they will gather and learn this is even more so for autistic children (Becerra-Culqqui., 2018; Bent et al., 2020; Dawson et al., 2010; Perry et al., 2013; Rogers & Vismara, 2008; Snijder et al., 2022). Therefore, for those children with development differences no matter how mild or moderate those characteristics for autism are, the more interventions that are put in place the more impact it will have for the future, and it could reduce the cost of further medical expenses (Bent et al., 2020). The average wait for a diagnosis is 4 years and 10 months this includes the 6 months wait between paediatrician appointments, and up to 24 months before having the first paediatrician appointment (Bent et al., 2020). The waitlist for allied health appointments is 12 to 18 months. Therefore, children are starting school before they receive a diagnosis which is limiting the supports available in schools.

The current interventions for children with differences are small programs in rural areas. The Early Childhood Development Program (ECDP) in rural towns is limited, usually only running one a week which goes for 2 hours or for 1 hour a week with the parents participating with their children or an outreach ECDP that works with the families and Kindergartens. These services are insufficient to ensure that a child is school ready, especially considering autistic children need to have double the amount of transitional options between kindy and schools than typical children (Makin et al., 2017; Stack et al., 2021).

In the rural town of Kingaroy there is a Early Years Service that provides in-home support to families with children to get them school ready. This service assists with navigating the pathways for pre and post diagnosis with families for neurodivergent children. The service also assists with behaviours of concern, routines, immunizations, transport to appointments, seeking mental health assistance for the adults. The Early Years Service provides a specialist program that also offers paediatricians, child development service, allied health professionals extensive information on children’s developmental differences. The service uses Steinbrenner et al., (2020) to provide evidence-based strategies for families to assist with teaching children social cues and to adjust behaviours of concern. Early Years address any concerns parents may have with typical children as well such as toilet training, eating difficulties and many others. This service has been within our community for seven years and understands that there is a growing need for this to be extended past the school attendance age. Currently Early Years is developing a playgroup for neurodivergent children that uses visual cues, social stories and other strategies to increase the understanding of social communication within a safe space for neurodivergent families. The program has been very successful in assisting families to have a better understanding of children’s development and a bigger toolbox for behaviours of concern. The only barrier is the medical health system and the extensive waitlist. Early Years also provides professional development for day care centres, parents attending prep orientation programmes and other services within the community around autism and developmental differences. Furthermore, providing advocacy when children are transitioning to prep to ensure that children are ready to start their schooling carer in the most positive way possible.

Case Study

First Nations redacted: s47F - child's reference 3 (undiagnosed suspected Autism) lived at home with his Mother, Father, 1 brother (diagnosed with Autism Spectrum Disorder) and 3 sisters (2 diagnosed with Autism Spectrum Disorder). The oldest child is 13 years of age and the youngest is redacted: s47F - child's reference 3. Mother was concerned as redacted: s47F - child's reference 3 seemed to be hyper focused on lawn mowers and showed other signs of Autism Spectrum Disorder that was similar to her other children. redacted: s47F - child's reference 3 wasn’t in daycare or engaged with any other community events or organisations. Mother found it difficult to go to community events due to her anxiety so therefore didn’t feel comfortable attending playgroups or any other child focused groups. redacted: s47F - child's reference 3 was a little physical with his siblings so this had made mother feel that she couldn’t send him to daycare in case his behaviours impacted the other children. Early Years worked with the family and got mother and redacted: s47F - child's reference 3 to attend playgroups with the support of the Early Year practitioner. Once mother and redacted: s47F - child's reference 3 were comfortable with the playgroup then they were

supported to go onto the waitlist for the local Kindergarten and then to enrol and attend the kindergarten. The program provided transport to the Kindergarten for drop off and pickup for 6 months. Mr 4, as he had a birthday, was then supported to go to the pre prep programs at the local school and facilitated extra visits to support in making the transition easier for Mr 4 and helping him to build connections at the school. The Early Years program also supported the family in other ways throughout this time:

  • Birth certificates for mother and Mr 3 to enable enrolment to daycare
  • Doctor appointments to get a paediatrician referral
  • Doctor appointments in Brisbane for siblings
  • Social stories to assist autistic siblings and Mr 4 with social communication and interaction.
  • Social inclusions with support to interact socially with others
  • Visual cues to assist with hygiene
  • Visual cues to assist with home guidelines
  • Video modelling to assist with social cues and how to engage in positive communication with others
  • Stakeholder meetings between parents and kindergarten
  • Stakeholder meetings between parents and school
  • Support at appointments for Child Development Service at the Hospital
  • Providing developmental questionnaires for the Child Development Service
  • Collaborating with kindergarten and the Child Development Service to get observations and further developmental questionnaires.

Mr 4 and mother became a lot more confident, mother was advocating for Mr 4 and taking him to kindergarten without assistance, and both were looking forward to Mr 4 attending school. Mother was no longer concerned about Mr 4’s behaviours with other children and the behaviours at home had improved greatly. Mr 4 hadn’t been diagnosed as he was still on the waitlist for the paediatrician and Bushkids but the intervention that the Early Years Service provided gave mother a better understanding of autism, a better toolbox of strategies that worked with behaviours of concern and the confidence to put these things in place for her family.

The existing Early Years Program is finding it incredibly difficult as there are requests from other services and community members to increase the age range of the children that are supported as there is a gap in the funding which doesn’t enable us to support children aged 6 to 12 years old (primary school aged children). The difficulties that are surrounded with this age group is that there are no developmental questionnaires for these children to easily identify developmental differences. The referral process for diagnosis is more complex and harder to navigate for families, the behaviours of concern are progressively getting worse therefore, making if very difficult for parents and teachers. Early Years practitioners have the knowledge and ability to advocate for these children at schools but access to Allied health professionals is non existent as the specialists who provide the assessments required for a diagnosis are within the school system. The waitlist for these assessments is long and varied therefore providing further barriers for children and families to get the support they require.

Early Childhood centres and schools don’t have an understanding of evidence-based strategies (Spencer et al., 2012; Steinbrenner et al., 2020) or the time to be able to make the interventions such as social stories, visual cues, video modelling and many others to assist autistic children in being school ready or addressing behaviours of concern (Spencer et al., 2012; Steinbrenner et al., 2020). These strategies also help with social communication and interaction which assists with building relationships with peers. Children with developmental differences seem to be getting expelled from Early Childhood Centres more frequently due to the lack of understanding by educators. There isn’t enough Early Childhood Centres in most rural towns to allow for all children to participate or enough educators to fully staff the centres.

There are many different playgroups available in different areas but some families that have children with developmental delays refuse to attend them as well as early childhood centres and schools due to negative interactions of typical parents and children as they are often ridiculed and made to feel extremely unwelcome. Families are opting not to engage with these facilities and are choosing to home school.

Medical practitioners often dismiss parents and do not listening to their concerns. Despite parental observations being one of the most important aspects of an autistic diagnosis (Bent et al., 2020). Parents are

forever portraying how the feel ignored or judged as parents because they aren’t listened to and this needs to change (Bent et al., 2020; Dugdale et al., 2021). Furthermore, autism needs to be viewed through the lens of the social model of disability as this is where the autistic person is seen as complete and don’t need changing that it is the environment we live in that needs to change to better suit the person rather than the medical model which views those with difference as curable (Fletcher-Randles. 2020; Grant & Kara. 2021; Vicek et al., 2020).

The wait list for Allied Health professionals, and Child Development Services are anywhere from 12 -18 months and up to 24 months for Paediatricians in rural areas. This is really limiting the assistance that children with differences are receiving (Bent et al., 2020). Even when you have a NDIS plan there is still a 12 month wait list for a speech therapist, and an Occupational Therapist can be longer with many refusing new referrals as their waitlists are full. Telehealth or internet-based appointments don’t work very effectively for children under the age of 5. There needs to be more incentive for these specialists to come to rural towns. The paediatrician is only available on certain days and comes from a larger town which isn’t enough to service the growing community.

Parents are struggling with having to cope with developmental differences, especially when it comes to autism whether it is undiagnosed or diagnosed, and they don’t have the strategies to assist their children. The parents’ mental health declines, stress increases, and the depression can lead to suicidal ideation (Bent et al., 2020; Burrell & Borrego. 2012; Fletcher-Randle. 2022). Parents get to the point to were they feel it is necessary to hand their child over to Child Safety. It is imperative that waitlist get reduced and that families get the assistance required.

Children that recognise that they are different to other children in their classes or at Early Learning Centres and don’t have any understanding about why this is run the risk of mental health concerns such as depression, suicidal ideation, anxiety and a lower quality of life which can have further impacts on medical resources (Clark & Adams. 2020; Cook et al., 2023; Pellicano & den Houting. 2022)

Identify equity and intersectional issues, in particular, children who identify as First Nations and culturally and linguistically diverse

The National Framework for assessing children’s functional strengths and support in Australia (Fitzpatrick et al., 2024) provides guidelines on how to help First Nations families. There are also some First Nations that don’t have a word in their native language for disabilities as they believe that all children develop at their own pace. The immediate family and extended families wrap around these children and help and support them. Interventions for the First Nations need to be presented in a way that suits their beliefs and are communicated appropriately. This is why it is so important to ensure that whoever is supporting the First Nations has a strength-based holistic approach.

The Ages and Stages Trak questionnaires also need to be delivered while yarning with the parents not in a tick and flick form as this can be very confronting for families especially if it doesn’t align with personal ideals.

Identify gaps in workforce support and training required to deliver Thriving Kids.

There is a gap between the children’s needs and the educator’s knowledge, and this starts with Early childcare education through to university studies for all educators. This needs to be rectified so that educators have a clearer understanding of autistic characteristics and how to put different strategies into action to assist these children and realise that many are intelligent. Child with differences may need to approach tasks in a different way and have a different thinking pattern but nevertheless they are able to achieve the same or similar tasks. A place to start would be to include modules of learning that is specific to autism within the curriculum of further education facilities and the different qualifications that allow people to work with children. Including Certificate III in Early Childhood Education and care through to Bachelor of Teaching.

Educators and Teachers are working the best they can with the knowledge and skills that they have but the general understanding of autism within this field in rural towns is considerably inadequate and that is due to the lack of funding for professional development.

Rural areas are already under supported by Allied Health professionals. To successfully deliver Thriving Kids, there will need to be a considerable increase in the Allied Health workforce with incentives for professionals to live permanently in rural communities.

Draw on domestic and international policy experience and best practice.

The policies that show the best practice are below:

  1. National Framework For assessing children’s functional strengths and support needs in Australia (Fitzpatrick et al., 2024).
  2. National Guideline For supporting the learning, participation and wellbeing of children and their families in Australia (Trembath et al., 2022)
  3. Participatory and Inclusive Autism Research Practice Guide (den Houting. 2021)
  4. United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)
  5. United Nations Convention on the Rights of a Child
  6. The Disability Discrimination Act 1992

Identify mechanisms that would allow a seamless transition through mainstream systems for all children with mild to moderate support needs.

Big Changes that take time

  • Support with learning how to implement strategies that work for autistic children
  • Communities that accept all differences. Start educating the general public about being inclusive helping those that need instead of making things harder for those with differences
  • Changing environments to meet the sensory needs of people with differences
  • Offering more interchangeable environments at schools, stop putting people in boxes not one size fits all. Example: does it really matter if a child needs to stand at the back of the classroom to learn or if they can’t sit in a group or if they aren’t able to wear the uniform because it hurts their skin. No, it matters that they are learning.
  • Offer different ways to teach use videos make differences acceptable by teaching children everyone is different instead of pointing those out that have autism, ADHD or other differences.
  • Change all University, Tafe and educational courses where the qualifications are to work with children to include broad information concerning autism, ADHD and intellectual differences.

Smaller Changes

  • Provide in home specialised assistance for families so that they have someone that can assist them with understanding, knowledge and implementation of strategies to help their children with differences
  • Provide schools and early leaning centres with money for professional development on autism and other developmental delays
  • Provide longer sessions and an easier referral pathway to ECDP Programs at rural schools
  • Provide better access to Allied Health professionals that are covered completely by Medicare so that low socio-economic families have access to the specialist required to assist their children
  • Ensure that there isn’t a limit on allied health appointments especially for the non-verbal children.
  • Provide paediatricians that are willing to listen to the parents concerns with shorten waitlist and less than 6 months between appointments

Author:

redacted

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