Is ABA Reasonable and Necessary?

The legislation states that For the purposes of specifying, in a statement of participant supports, the general supports that will be provided, and the reasonable and necessary supports that will be funded, the CEO must be satisfied of all of the following in relation to the funding or provision of each such support (page 39). Here are the key components of this part of the Act, with my comments underlined and in italic:

a)    the support will assist the participant to pursue the goals, objectives and aspirations included in the participant’s statement of goals and aspirations; (virtually all interventions for autism that are classified as established are based on the scientific discipline of applied behaviour analysis)

b)    the support will assist the participant to undertake activities, so as to facilitate the participant’s social and economic participation; (research indicates that with EIBI, some children with ASD may achieve “best outcomes” and may be able to transition into mainstream school without support. These children may then go on to become tax paying members of society as adults. Even for children who do not attain “best outcomes,” their potential for economic and social participation is likely to be greatly improved)

c)    the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support; (For individuals with ASD and a co-morbid intellectually disability, the lifetime cost society is thought to be in excess of $1 million. However, the quality of life cost to families is much greater. For example, families of a child with autism frequently must pay higher than average childcare costs, and many times one parent is forced to give up work or reduce working hours due to provide care for the child with ASD. It is estimated that only 15% of adults with ASD are engaged in meaningful employment. Cost benefit analyses of EIBI repeatedly determine that the cost savings substantially exceeds the early intensive treatment cost for young children with ASD)

d)    the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice; (virtually all interventions for autism that are classified as established are based on the scientific discipline of applied behaviour analysis. ABA has been endorsed internationally as a safe an effective treatment for autism)

e)    the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide; (parents, family members, carers, and teachers are an integral part of the child’s therapy team and receive training on the therapy program. However, it is not reasonable to expect the parent, carer, or teacher to have the clinical expertise to run a therapy program with minimal support, nor is it reasonable to expect a parent to have the financial or emotional means to conduct the majority of the intensive therapy hours)

f)    the support is most appropriately funded or provided through the National Disability Insurance Scheme, and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered: (autism is a pervasive developmental disability for which there is no known cure. There are no effective bio-medical interventions for autism at this time. The onset of the disorder occurs at or before birth, but the symptoms may not become evident until age 2 or 3. Pervasive means that the disability is likely to impact the child across several developmental domains, and is likely to impact the child’s functional independence as he or she gets older in various ways)

a.    as part of a universal service obligation;

b.    or in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.

g)    The National Disability Insurance Scheme rules may prescribe methods or criteria to be applied, or matters to which the CEO is to have regard, in deciding whether or not he or she is satisfied as mentioned in any of paragraphs (1)(a) to (f).

What do Australian Autism Experts Think?

In their 2016 report prepared for the NDIS (Autism spectrum disorder: Evidence-based/evidence-informed good practice for supports provided to preschool children, their families and carers), Roberts and Williams concluded that children who have received a diagnosis of autism should receive 20 hours per week of autism-specific early intervention. Intensity of intervention appears to be a critical factor, and has been shown to facilitate positive outcomes in young children with ASD.

Summary

In summary, I believe that when planners and other NDIS representatives state the NDIS “won’t fund ABA,” they are in violation of the legislation. This also goes against the advice provided by Australian autism experts, who were asked to conduct an independent review of the research literature and provide best practice recommendations for young children with autism. This should be brought to their attention quickly and firmly. If the NDIS fails to provide funding which will allow families to access intensive early intervention, the cost to society in the long term is likely to be exponentially higher.

We at Lizard are committed to helping you advocate for funding for what we believe is medically and educationally necessary intervention for your children. We have had several families obtain good funding packages thus far by refusing to accept “no” for an answer.