NDIS

Early Investment in Autism – What’s Next on the NDIS Strategy Roll Out?

Since the implementation of the NDIS in 2013, we have seen the positive benefits this scheme has provided to people.  But when Government funding starts to dry up a little, service providers will need to stay ahead of their game and realise that the landscape more than ever is highly competitive as consumer based models drive this innovative change.

The National Disability Insurance Agency (NDIA), the body that governs the NDIS has now received initial data from the trial sites around Australia.  Each trial site varies and has its own unique cohort group.  In South Australia, service providers for these trial sites have delivered disability services to children between the ages of 1 to 5; from 1st July 2014 that cohort group has been extended to include children between the ages of 0 to 12.  Initial data from 784 people surveyed around the nation revealed that there were only 11 people dissatisfied or extremely dissatisfied with services being delivered to by the NDIA – and all of them were from South Australia.The needs of children with disabilities have been under served for years, with families having to navigate many barriers to access combined services from the education, health and disability sectors.  The result has been that funding packages have always fallen short of best practice guidelines.  Best practice guidelines were developed in 2007 and funded by the Commonwealth Department when the Hon Chris Pyne was the Minister for Health and Ageing.  This evidence based review was independent and free of any departmental influence.  The Department of Social Services have in turn sponsored an update in 2011 (“Guidelines for Good Practice”).

The needs of children with disabilities have been under served for years, with families having to navigate many barriers to access combined services from the education, health and disability sectors.  The result has been that funding packages have always fallen short of best practice guidelines.  Best practice guidelines were developed in 2007 and funded by the Commonwealth Department when the Hon Chris Pyne was the Minister for Health and Ageing.  This evidence-based review was independent and free of any departmental influence.  The Department of Social Services have in turn sponsored an update in 2011 (“Guidelines for Good Practice”).As a result of market driven consumer based models, we have seen a positive shift in momentum towards innovative services introduced into South Australia by service providers from interstate for Autism Early Investment (EI) programs with an evidence-based multi-disciplinary approach.  These multi-disciplinary programs are designed to provide behaviour modification, speech therapy, occupational therapy and early education learning. They yield proven optimal outcomes for children with autism from evidence-based research.

As a result of market driven consumer based models, we have seen a positive shift in momentum towards innovative services introduced into South Australia by service providers from interstate for Autism Early Investment (EI) programs with an evidence-based multi-disciplinary approach.  These multi-disciplinary programs are designed to provide behaviour modification, speech therapy, occupational therapy and early education learning. They yield proven optimal outcomes for children with autism from evidence-based research.Examples of these are the AEIOU Foundation (Qld) and Lizard Centres (NSW), two of the largest most respected providers of EI programs for children with Autism Spectrum Disorder (ASD).  These programs have also been designed to build a family’s capacity to work whilst delivering such results with published outcomes independent of a child’s social and financial circumstances.  These programs can be costed, and cost

Examples of these are the AEIOU Foundation (Qld) and Lizard Centres (NSW), two of the largest most respected providers of EI programs for children with Autism Spectrum Disorder (ASD).  These programs have also been designed to build a family’s capacity to work whilst delivering such results with published outcomes independent of a child’s social and financial circumstances.  These programs can be costed, and cost benefit modelling has been undertaken (Cost:Benefit ratio of 1:20) provided by Synergies Economic Consulting; Economic costs of Autism Spectrum Disorder 2011.  For more see a submission as part of the State Wide Autism Project (SWAP): http://tinyurl.com/k6vyhtz

The Productivity Commission states that: “Funding under Tier 3 should be based on good evidence of effectiveness and an initial analysis of likely cost-effectiveness”.  Yet the NDIS is ignoring such and choosing to fund service models for which a lack of effectiveness has been demonstrated and no analysis of cost effectiveness undertaken.At present, the NDIS has a ‘proposed’ trans-disciplinary support item (arguably a ‘cap’) of up to $16000 p.a. for two (2) years.  This is expected to provide a therapy based program to build the capacity of families to deliver EI programs.  Based on therapy charges and a travel component under the NDIS of $164 per hour, it is likely that this package will provide two (2) hours or less EI (benchmark of 15 hours under best practice guidelines) directed at building family capacity (a component of but not a replacement for good practice) with no evidence for effectiveness of such processes for any of the primary outcomes for autism. Current models of funding, do not allow families to build work capacity.

At present, the NDIS has a ‘proposed’ trans-disciplinary support item (arguably a ‘cap’) of up to $16000 p.a. for two (2) years.  This is expected to provide a therapy based program to build the capacity of families to deliver EI programs.  Based on therapy charges and a travel component under the NDIS of $164 per hour, it is likely that this package will provide two (2) hours or less EI (benchmark of 15 hours under best practice guidelines) directed at building family capacity (a component of but not a replacement for good practice) with no evidence for effectiveness of such processes for any of the primary outcomes for autism. Current models of funding, do not allow families to build work capacity.Based on the above pattern of policy, the autism community can rightfully remain nervous and wary of any policy that can be rewritten by the NDIS within the guidelines for best practice.  For the majority of children and their families this model will be ineffective, a waste of taxpayer’s money, and a lost opportunity for the child and their family.

Based on the above pattern of policy, the autism community can rightfully remain nervous and wary of any policy that can be rewritten by the NDIS within the guidelines for best practice.  For the majority of children and their families this model will be ineffective, a waste of taxpayer’s money, and a lost opportunity for the child and their family.The NDIA’s current proposed maximum EI over a child’s lifetime ($16000 p.a. for 2 years = $32,000 lifetime) is less than the average annual package for an adult with a disability. Surely an insurance scheme would focus on building ability wherever possible to mitigate the costs of long-term disability as stated by Synergies Economic Consulting; Economic costs of Autism Spectrum Disorder 2011. The greatest gains in terms of long-term cost savings to the community are achieved by improving behaviour in children with very severe autism whilst allowing other family members to exercise their undeniable right to participate in the workforce.  Furthermore, recognising the guidelines for good practice as necessary and providing reasonable funding to children with autism to provide choice around services which deliver these guidelines, a reasonable funding package required to do this is $34 000 per annum (equivalent to the average package under the NDIS).

The NDIA’s current proposed maximum EI over a child’s lifetime ($16000 p.a. for 2 years = $32,000 lifetime) is less than the average annual package for an adult with a disability. Surely an insurance scheme would focus on building ability wherever possible to mitigate the costs of long-term disability as stated by Synergies Economic Consulting; Economic costs of Autism Spectrum Disorder 2011. The greatest gains in terms of long-term cost savings to the community are achieved by improving behaviour in children with very severe autism whilst allowing other family members to exercise their undeniable right to participate in the workforce.  Furthermore, recognising the guidelines for good practice as necessary and providing reasonable funding to children with autism to provide choice around services which deliver these guidelines, a reasonable funding package required to do this is $34 000 per annum (equivalent to the average package under the NDIS).What’s next in the NDIS roll out strategy for further EI programs for children with autism? Scrutiny in the provision of services needs to be high on the NDIA radar.  Accrediting service providers against the guidelines for good practice will ensure quality, value, safety and positive outcomes that reduce the burden on our economy.  Early investment pays off, we know that children who have autism if given the opportunity and support to participate, will reduce the current overwhelming burden on welfare, correctional services and social service systems.

What’s next in the NDIS roll out strategy for further EI programs for children with autism? Scrutiny in the provision of services needs to be high on the NDIA radar.  Accrediting service providers against the guidelines for good practice will ensure quality, value, safety and positive outcomes that reduce the burden on our economy.  Early investment pays off, we know that children who have autism if given the opportunity and support to participate, will reduce the current overwhelming burden on welfare, correctional services and social service systems.

Acknowledgement AEIOU Foundation CEO, Alan Smith for use of his personal notes.