The NDIA’s latest consultation paper on autistic kids is about more than early intervention like the title suggests. It proposes rigid and fixed funding blocks for children’s NDIS plans, well below averages in Nick Avery’s region. Nick wants you to know why this consultation is so alarming – and encourages you to provide feedback.
Concerningly, the NDIA has just released another Consultation Paper on Interventions for Children on the Autism Spectrum, only one day prior to the closure of submissions to the Joint Standing Committee’s investigation into Independent Assessments, ensuring most organisations and individuals making submissions would be unable to review the document and include it in their submission. Equally concerning is the extremely short time frame for the consultation – only four weeks (originally due end of April, now extended to May 14 2021).
The Consultation Paper refers to a recommendation that “the people who deliver intervention know the person well and respect their feelings and views”.
In order for this to occur, NDIS needs to sufficiently fund therapy interventions to enable providers to build rapport, learn about the person and their needs, understand and respect their feelings and views. To do this requires time.
When NDIS limits and reduces funding for therapeutic interventions for autistic people of all ages, this prevents the development of this rapport in order to provide suitable supports to meet the person’s needs.
In our region, for example, autistic children and teens aged 7 years and over are typically only allocated between $5,000 and $9,000 per year for therapy. An allocation of $5,000 is only sufficient to see a single therapist fortnightly, whereas autistic children typically require therapeutic intervention from a multidisciplinary team including psychologists, occupational therapists and speech pathologists on a minimum basis of fortnightly (many require weekly support) in order to develop and maintain the skills the therapy is targeting.
Many autistic people also have difficulties with low muscle tone, balance, coordination, joint hypermobility and toe-walking, which need support and intervention from a physiotherapist. For autistic children aged 0-6yrs, access to multidisciplinary therapy at least weekly is needed in order to develop and retain skills.
Alarmingly, 7.1 of the Consultation paper claims that:
“Many children on the autism spectrum will benefit from short term early intervention that is delivered through our early childhood partners and may never need to become participants of the Scheme… Short term early intervention is generally up to twelve months.”
Autism is recognised to be a “life-long developmental disorder that affects how people behave and interact with the world around them” by the Australian Government. The World Health Organisation recommends that “A broad range of interventions, from early childhood and across the life span, can optimize the development, health, well-being and quality of life of people with autism.” It may be mild, moderate or severe, with autistic people requiring support throughout their lifespan.
Autism is not something which can be ‘cured’ by 12 months of early intervention therapy.
Fixed funding blocks
The NDIA’s Autism Early Intervention Consultation paper proposes set funding levels for two age groups, under 7 years and 7-12 years (pages 27-31).
Disturbingly the consultation paper suggests 4 levels of funding, with the minimum amount of funding allocated for an entire year being only $4000 for children aged 0-6 years, and $2,400 for children aged 7-12 years.
These amounts are completely insufficient to provide even a bare minimum of reasonable and necessary support. This funding amount is deemed by the NDIA to be suitable for children for whom the Independent Assessment finds one area of high need and one area of medium-low need. Note that from these tiny funding allocations, NDIA will require therapy providers to assess the therapy needs of the child, provide therapy, and write report(s) for submission to NDIA. $2,400 equates to a maximum of 12hrs of therapy – by the time assessments and reports are written, that equates to less than 1 therapy session per 2 months, not including any other support needs the child may need. Multidisciplinary therapy, which the NDIA acknowledges to be of the highest benefit to autistic children, is not possible with such low levels of funding.
Equally concerning are the maximum funding amounts being proposed by NDIA for autistic children. For children aged 0-6 years, the maximum funding amount proposed is $35,000, and for children aged 7-12 years, the maximum funding amount proposed is $21,000. These maximums are for an indicative level of funded support of Level 4, where the Independent Assessment reflects three areas of high need with possibly one to three medium-low areas identified, or equipment needs also identified. This is the maximum funding amounts recommended in the consultation paper for children who are non-speaking, and unable to communicate their needs, inclusive of children with self-harm and high behaviour support needs.
In addition to this, NDIA proposes to drastically reduce funding in the NDIS plans of autistic children by 40-45% each year, assuming they are not ‘cured’ in the first 12 months.
Funding before the NDIS
Prior to NDIS, Helping Children With Autism (HCWA) funded up to $12,000 for early intervention, at a maximum of $6,000 per year. In Western Australia the state government also funded 4 hours of early intervention therapy per week for all autistic children until they turned 6 years of age. People were also able to access some therapy supports through the WA Health Department and the Disability Services Commission. Those supports are no longer available – defunded as part of the WA government’s 50% contribution toward the cost of delivering the NDIS – designed to replace and improve on these earlier supports.
If the federal government and NDIA proceed with these proposals, there is an extremely high risk of increased relinquishment of autistic children to state care, and requiring much higher support in adulthood throughout their lifespan had their support needs been adequately funded in childhood.
Of note also is the deceptive case study presented in Appendix One (p.36) of the consultation paper. The NDIA paper presents an example of a family requesting funding for the cost of private swimming lessons for ‘Jenny’, who is 4 years old, for the purpose of ‘building community inclusion’.
Families of autistic children frequently request funding for the difference in cost between private and group swimming lessons. However, the reason for this request is because many autistic children are unable to learn the life-saving skills of swimming in group settings, and require private swimming lessons throughout the year, often for many years in order to learn and retain this vital skill. Many autistic children are drawn to water, have limited or no understanding of risk or protective behaviours, and many are ‘runners’. Autistic children are at a significantly higher risk of drowning than their peers.
Autistic people make up 32% of NDIS participants
That’s the largest disability group in the NDIS at 137,415 Australians. When people with developmental delay and Global Developmental Delay are also considered, this becomes 192,206, at 44% of NDIS participants (data correct at 31/12/2020).
Have your say
You can view the NDIS Consultation Paper on Early Intervention for Autism on the NDIS website. Please give your feedback on this issue, and send a clear message to the government and to NDIA that these changes are unacceptable.
Submissions close Friday May 14, 2021.
Nick Avery is an autistic parent of two autistic young adults, and CEO of the South West Autism Network (SWAN), a Disabled Persons and Families Organisation in regional Western Australia.
You can read the South West Autism Network (SWAN) Submission to the Joint Standing Committee Inquiry into NDIS Independent Assessments here (PDF, 1MB, 12 pages).