Submission to enquiry on the “Thriving Kids” program.

The “Thriving Kids” initiative is urgently needed because inappropriate criteria for the NDIS has resulted in an unsustainable blowout in its annual cost. It is important to consider both the management of ‘Thriving Kids’ and NDIS in the context of ‘disability’.

The context of ’disability’ is that the client has an underlying bio-psycho-social disorder that results in being unable to undertake some physical, intellectual, language and/or social/emotional processes with competence in the ‘normal’ range. This impairment may interfere with activities of daily life to a degree acknowledged as a handicap. The handicap requires supports of various kinds to achieve optimal participation in activities of daily life and optimal developmental progress. The underlying disorder may require a treatment program concurrently with the handicap supports.

For any program of support to be efficient and cost-effective it must be based on measurement of the underlying disorder, the degree of disability, the extent of the handicap, and the cost-effectiveness of the evidence-based support programs required for appropriate participation in activities of daily living. This description of context highlights the need for adequate multidisciplinary assessment, case-management planning, service delivery and monitoring of progress.

Community surveys have consistently shown that about a quarter of all children have a degree of disability in one or more domains of development. Historically, these disabilities have been perceived and dealt with by an uncoordinated patchwork of public and private services in the health, education and welfare sectors. The NDIS was instituted to assist the most severely disabled children whose costs and burdens of support were devastating for their families. However, the availability of this excellent program has had two destabilizing consequences. On the one hand, there have been huge numbers of requests for support of lesser degrees of disability, and on the other hand there have been reductions in previously available support services on the grounds that NDIS would meet those requests. The present inquiry into the proposed ’Thriving Kids’ program is an opportunity to avoid repeating (and perhaps reversing) the mismanagement mistakes of NDIS.

The desired outcome for all children with disability is that they receive a thorough multidisciplinary assessment, appropriate case management plan agreed in consultation with the family, and appropriate treatment and support. The NDIS should deal with the most severely disabled (5%) and the ‘Thriving Kids’ program for the remainder of the quarter. This goal needs major administrative changes and coordination in both programs. Central to both is the issue of assessment, which ideally should be coordinated by the one Commonwealth Government agency (albeit if undertaken at state level by delegated agencies).

Assessments should be undertaken at Community Hubs available in every Local Government area. See Appendix A for recommended assessment details. See Appendix B for recommended governance arrangements. The assessment conclusions and agreed management plan should be

included on the young person’s health care record and used for coordination of support services (centrally monitored by the nominated Commonwealth Government agency).

Inclusion in NDIS funding would be for children whose functioning is two or more standard deviations below the mean in one or more of the functional domains. As this defines the most serious 1.5% in each domain, the aggregate cohort would approximate the desired 5% limit, given that many would be counted in more than one domain. The remainder of disabled children would be managed in the ‘Thriving Kids’ program. From Appendix C the estimated population of young persons under the age of 20 would be 7.3 million. The NDIS 5% would thus be about 365,000, and the ‘Thriving Kids’ cohort would be about 1.8 million. This is a substantial caseload and would require a solid Commonwealth/State agreement to cope with it. Parameters are suggested in Appendix B.

The major mismanagement of the NDIS program has been that it was too beholden to the ‘diagnosis’ label than to the assessment of the disability. Diagnosis is only a shorthand way of identifying commonly occurring patterns of symptomatology of disorders. It is poorly correlated with disability and handicap. Assessment requires careful ascertainment (and measurement) of the bio-psycho-social components of the underlying disability and the level of handicap, which is what is needed, regardless of the diagnosis. Assumption that children with developmental disorders such as autism will all have disabilities warranting support from the NDIS has been a major cause of the blowout in referrals, as many children with autism can be managed within generalist programs.

Conclusion

A Commonwealth/State agreement is required for whole of Government responses to the social and health care needs of children with disabilities and their families.

The Commonwealth Government roles include:

• leadership of the initiatives,
• funding the administrative structure for:
  • coordinating the assessment methodology,
  • recording the findings and recommendations,
  • researching outcomes,
• Medicare and Social Welfare funding

The State Government roles include:

• collaboration with local government in provision of Community Hubs incorporating Community Health Centres with the multidisciplinary staff (salaried or sessional) to undertake developmental assessments,
• coordination with the range of accredited health, welfare and social agencies, providing the necessary services.
• ensuring that State departments of education and health provide appropriate programs for children with disabilities whose management plan have been developed in the assessment process.

Appendix “A”

The assessment process

A formal assessment involves interviews of child and caregivers. Interviews cover presenting symptoms, past and current social/family history/ medical history, and an age-appropriate physical health and mental state assessment (cognitive intellectual abilities, reasoning, memory, thought processing, language skills, affect and executive functioning). These individual family member assessments are complemented by family functioning assessment. The goals of this assessment are:

• to determine whether functioning is sufficiently outside the normal range to be regarded as a disorder (case identification),
• to determine whether the pattern of symptomatology matches regularly occurring patterns described in the diagnostic lexicon (diagnosis),
• to state a hypothesis (case formulation) of:
  • the underlying pathophysiology of the disorder (biopsychosocial etiology),
  • what factors set the stage for the problems (predisposing factors),
  • why the disorder has occurred at this time (precipitating factors),
  • what factors maintain it as a dysfunctional pattern (perpetuating factors),
• to summarise the issues that must change to produce a desired outcome (goals for change), and
• to propose a means by which those changes could be achieved (treatment plan).

The latter two goals may be initiated by the professionals, but it is essential for success that they be collaboratively developed with clients so that they are mutually “owned” by the parties involved in any therapeutic process. The plan should address the whole system needs, not just the symptoms of an individual. For example, it may not be feasible to treat a disorder in a person without changes in family supports.

It is clear that such assessments require multidisciplinary team contributions, coordinated at a team case conference.

Appendix “B”

A Commonwealth/State agreement is required for whole of Government responses to the social and health care needs of children with disabilities and their families. It is not only impractical but undesirable for this to be a wholly Commonwealth project because most of the implementation is through state-based programs. The States need Commonwealth support and the Commonwealth needs State support, whilst the disabled children need everybody’s support.

The Commonwealth Government roles include:

• leadership of the initiatives, to ensure there is reasonable consistency of quality care for disabled children throughout Australia
• funding the administrative structure for:
  • coordinating the assessment methodology, ensuring up-to-date knowledge translation of research evidence
  • recording the findings and recommendations, ensuring that practice-based evidence is contributed to NHMRC.
  • researching outcomes, to ensure that practice-based evidence becomes usable to shape evidence-based practice
• Medicare and Social Welfare funding to ensure that the assessment and support services are appropriate for all disabled children irrespective of socioeconomic status.

The State Government roles include:

• collaboration with local government in provision of Community Hubs incorporating Community Health Centres where the multidisciplinary assessment teams can provide the necessary expertise with cost-effectiveness and quality control.

• coordination with the range of health, welfare and social agencies, so that consultation and collaboration in support is available in the “one-stop-shop”.

• ensuring that State departments of education and health provide appropriate programs for children with disabilities whose management plan have been developed in the assessment process.

Appendix “C”.

Estimated Child Population by Age Group and State (2025)

These figures are rounded estimates based on projected state populations and age distributions from ABS and Centre for Population data.

Notes

• NSW and Victoria lead in absolute numbers due to their larger populations.
• Queensland has a notably youthful demographic, especially in regional areas.
• The NT has the highest proportion of children relative to its total population, though its absolute numbers are smaller.

This submission has been prepared by Mental Health for the Young and their Families — Victorian Group, PO Box 206, Parkville 3052. redacted

Email: admin@mbyfvic.org

Mental Health for the Young and their Families (MHYFVic)

Mental Health for the Young and their Families (Victorian Group) has a twenty-year track record of not-for-profit striving for improvements in services. It has done this in many ways.

The website (mhyfvic.org) maintains an up-to-date database of mental health best practice in prevention, early intervention, standard treatment and health promotion, citing best available research evidence. Building on this basis, it provides educational programs such as workshops, seminars and lectures concerning child and family mental health to professionals and people of lived experience, and also disseminates information through newsletters, bulletins, the website and presentations such as the nationally-delivered Winston Rickards Memorial Oration. MHYFVic advocates with government and non-government agencies for effective intervention programs, health promotion and preventive measures pursued in the context of human rights and wider community networks enhancement. It also facilitates provision of scientifically informed contributions to commissions of enquiry and other policy development forums.

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