Submission: Inquiry into the Thriving Kids Initiative
Executive summary
Although the suggestion of better inclusion is admirable and aspirational, “mainstream” services are neither adequate nor “ready to go” to appropriately support some children with developmental delay and autism. Early intervention including 1:1 intervention, family support, advocacy, consultation and mainstream capacity building such as that available currently available through NDIS remains a critical consideration and plans to resolve this in the current timeframe are either not developed or not available for comment (unable to comment).
Comments relating to current terms of reference for the inquiry into Thriving Kids are included below.
Opportunities
Currently there is both scope and need for “mainstream” services to better cater for a larger section of varied human experience of children and their families, ie a catering better for a wider section of the “bell curve”. This is both important societal learning and critical for a better understanding of what “inclusion” might look like in the future. This is most definitely not a process of expecting “compliance” or using outdated and punitive models laying blame on those who do not “fit” mainstream services or maintstream society ( for example the anecdotal increase in child in kindergarten being “suspended” from mainstream kindergartens very alarming and indicative that “mainstream” is not currently set up for change required by Thriving Kids). A considerable amount of support, adaptation, training, working with multiple models, staff support, organisational cultural improvements, funding and resources is required for mainstream to cater for more varied needs. Thriving kids may present an opportunity to hear the “voice” of those with knowledge (both lived experience as well as observed or researched/ professional or advocates) about how mainstream can help or hinder a child’s growth, development, inclusion and possible leadership roles into adulthood. Getting this wrong has high risk that “hinder” continues and becomes detrimental. Opportunity not to remove support that currently exists but improve it.
Concerns
Significant concerns exist at the practical implementation and very uncertain planning and funding processes. There are negative flow on effects including:
MEDICARE Funded medicare sessions have been touted as the way these children and families can get professional intervention.
o Medicare arrangements currently do not sustainability support allied health practices. Reliance on this as an option for Thriving Kids to succeed is fraught. o Medicare currently inadequately covers session time leading to out of pocket requirements by families. For children with ongoing developmental concerns this is considerable, for many unattainable and additional to current concerning cost of living issues o Many families have more than one child with developmental concerns leading to out of pocket payments being inhibitive or requiring families to make a choice between which child gets support o Medicare currently only covers part of a service (eg part of a session), it does not cover assessments, reports, travel, consultation with the child’s care givers beyond the family (eg child care etc, school), resource and equipment research requirements, case conferencing to meet best practice with multidisciplinary input. o Medicare encourages care to be given (if waiting lists allow) when the funds are available rather than when needs arise (eg once an annual amount is exceeded, new developmental challenges that arise cannot be supported and a child / family needs to wait until the next year leading to a loss of early intervention efficacy.
MINIMISING ADVERSE IMPACT OF ILL- EQUIPPED OR UNDER
RESOURCES MAINSTREAM SERVICES: Expecting a child to manage in a mainstream setting without adequately trained personnel, support and environmental adjustments can be TRAUMATIC for the child and in fact create more adverse responses and behavioural concerns if “just right challenges” are not made available to a child and expertly titrated. This can also be traumatic for parents / families who not only see their child struggling but also are ill-equipped to make needed changes to the system on their own. I state this on the basis of personal experience both as a parent of a child with challenges attempting to manage mainstream as well as a professional working in early intervention. Inclusion in mainstream costs money resources and personnel including consultation, inclusion of and support to families by non judgemental staff who are willing to learn from the parents lived knowledge of the child (comments like “they are in denial” is not helpful for engagement for many parents). This inclusion process requires cost analysis and true funding, not “being supported by current mainstream services”. Currently mainstream is not well- equipped at a systemic level, despite good intentions of some individuals. Funding for allied health professionals needs to cover both direct services to the child as well as consultation to the family and consultation to the child’s “village” including child care / preschool / school. Access to therapeutic input is critical. This may occur in clinic (where learning opportunities and environment can be titrated to the need of the child in terms of noise, busyness, set up, equipment etc) but observation of the child insitu at periods of time is required, this requires travel support.
PRODROMAL PHASE: children with developmental delays may have significant concerns early on requiring prompt access to highly skill early intervention. Some of these children may have a diagnoses of Autism level 3 a couple of years later than when concerns were noted by parents or others. Relying on mainstream services in this scenario is highly inappropriate and detrimental. What is the pathway for these children where the significance of concern is being monitored and 1:1 early intervention is expected and needed in this time. Some children have significant developmental delay for reasons other than ASD L3, what is the pathway for these children to access support beyond mainstream HEALTH CHECKS / HEALTH BUS STOPS- 2 year old or 3 year old screening may have a place in some circumstances, however has been shown to be very detrimental to communities where a screening has been done but there are not adequate services, resources or knowledgeable personnel to follow up where concerns have been raised. If this is rolled out Nationally without adequate services this is very poor. Perhaps there are other pathways for families that have a concern – these need to be explored. EVIDENCE BASE: there is considerably more evidence based practices than for this group than has been discussed in relation to Thriving Kids so far (to my knowledge – it has been hard to find information as planning appears not yet to have commenced).
Recommendations / way forward
Consult with peak bodies (professional, advocacy and consumer) and other relevant personnel regarding early intervention “evidence base”, ensure available services maintain current variety to meet many and varied needs in the community (not restricted to one or two “programs” eg Inklings).
Mainstream adaptations need to include: o Options for environments with smaller numbers of children – current trend of large child care centres with 20-30 active and loud children in a room without sound reduction is highly detrimental to children with delays or autism o 1:1 support and intervention o Time and support and at times respite options for families – managing in “mainstream” is MUCH harder (child’s and families resources are taxed more)
o One size in mainstream does not fit all. Service options need to exist. Also
Evidence- based programs” do not necessarily meet all needs, this needs to be unpacked much more than it has been to date. o Change from “compliance” and sometimes punitive approaches where a child functions, learns or expresses differently is critical. Clearly rules are important for safety and respect however the behaviour of many children is often misunderstood or misattributed (eg the child “doesn’t want to” rather
than is not yet able to ) in mainstream settings. Without specialised training for example a child with motor planning problems who has trouble making their body move to follow a direction may be labelled “disobedient”, a child who lashes out due to overload (placed on them by the environment) may be labelled “aggressive”, a child with a trauma response may respond differently than expected or shut down etc etc. Fund advocacy and create simple pathways for families (and professionals supporting them) to access this
Thank you for the opportunity to comment
3.10.25