Words from Lizard Centre’s Clinical Director, Dr Erin Leif, PhD, BCBA-D
I continue to hear stories of planners and other NDIS representatives stating the NDIS “won’t fund ABA.” I believe this reflects a lack understanding of what ABA truly is. I also believe this is a way of saying to families that the NDIS will not fund intensive intervention, given the immediate, short-term costs. However, at its core, the NDIS wants value for the money when providing funding to families, and that is exactly what an early intensive behavioural intervention program offers.
I encourage you all to read and share Lizard’s position paper on ASD interventions, which can be found on our website here.
I want to offer a few suggestions and bits of information that may be helpful when preparing for your planning meeting.
What is ABA?
First off, we need to define applied behaviour analysis in user friendly language. ABA is not a single type of intervention, nor is it only relevant for people with autism. ABA is a natural science approach to learning. The professional practice of ABA is informed by findings in both basic and applied research on learning. Within an ABA therapy program, we use many tactics derived from research to help children with autism learn new skills. Some of these tactics include discrete trial instruction, natural environment teaching, pivotal response training, task analysis, shaping and chaining, prompting and prompt fading, positive reinforcement, augmentative communication systems, video and in-vivo modeling, self-management, parent training, behaviour skills training, functional behaviour assessment, functional communication training, etc. Once we get to know the child and his or her strengths and skill deficits, we will design an individualized therapy program using any combination of the above mentioned teaching tactics.
One hallmark of ABA is data collection. We use data to guide our decision making. Data are objective and measurable, and should be contrasted with “guessing” or relying on personal opinion or anecdotes to tell us how well our therapy is going. Data tell us when a skill is mastered and ready to be moved on or embedded into a higher level skill. Data also tell us when a skill is not progressing and we need to make a program modification. Following program modifications, we continue to monitor the data to ensure that the child makes progress.
Why Should the NDIS Favor an ABA Approach to Autism Treatment?
Larssen (2013) states: Applied Behavior Analysis (ABA) and Early Intensive Behavioral Intervention (EIBI) for Autism are quite possibly the best examples of evidence-based behavioral health care. Impartial independent review panels consistently agree that ABA and EIBI treatments for autism are effective, and that the extensive body of research meets high standards of scientific evidence. These reviews also report that ABA and EIBI significantly improves the net health outcome in Autism in substantial and far-ranging ways.
What is striking about the independent reviews of EIBI and ABA for autism is that the more careful the scrutiny, the more emphatic are the conclusions. For example, the New York, the Maine, and the US AHRQ commissions embarked upon yearlong independent reviews of the scientific support of ALL possible interventions for autism. Each panel stringently applied scientific standards of proof to all interventions and found that ABA-based therapies alone, of all possible treatments for children with autism, had been proven effective.
ABA should also be favoured above other treatments for ASD because:
- ABA is public – everything about ABA is visible, explicit, and straightforward. There’s nothing hidden, ephemeral, or mystical about ABA. There are not metaphysical explanations. ABA’s transparent nature should be valued by all constituencies: consumers, providers and tax-payers.
- ABA is accountable – Therapists and teachers whose work is informed by ABA focus on environmental variables that reliably influence learning and that can be acted upon. This yields a form of accountability and responsibility that is good for the public and consumers.
- ABA is self-correcting – Direct and frequent measurement is the foundation and most important component of treatment based on ABA. It enables practitioners to detect their successes and, equally important, their failures so that changes can be made in an effort to change failure to success.
- ABA is optimistic – Children with autism are among the most difficult of all children to teach. ABA provides their teachers and parents a legitimate sense of optimism. First, direct and continuous measurement lets us see small improvements in behavior that would otherwise go unseen (and therefore not reinforced and, as a result, perhaps not repeated). Second, each time a teacher or parent successfully uses a behavioral technique, the more optimistic he or she is about the prospects for future success (positive outcomes are the most common result of behaviorally based interventions). Third, the peer-reviewed literature in ABA is rich with examples of children, who many had considered ineducable, acquiring life-enriching communication, social, and independence skills.
The NDIS Legislation
The NDIS Act can be found here. There are a few key points in the legislation that are important to be aware of.
Principles relating to plans:
The legislation states that the preparation, review and replacement of a participant’s plan, and the management of the funding for supports under a participant’s plan, should so far as reasonably practicable (page 33). Here are the key components of this part of the Act, with my comments underlined and in italic:
a) be individualised; and
b) be directed by the participant; and (your goals should be reflected on the plan, not your planner’s interpretation of your goals)
c) where relevant, consider and respect the role of family, carers and other persons who are significant in the life of the participant; and
d) where possible, strengthen and build capacity of families and carers to support participants who are children; and (parent training is a core component of an EIBI program)
e) if the participant and the participant’s carers agree—strengthen and build the capacity of families and carers to support the participant in adult life; and (an EIBI program is designed to build capacity to the child will have less need to rely on others for basic care and support as an adult)
f) consider the availability to the participant of informal support and other support services generally available to any person in the community; and (young children with ASD often lack the pre-requisite skills to benefit from informal supports, such as childcare and playgroups. An EIBI program is designed to strengthen these skills so that the child can be successful in mainstream environments)
g) support communities to respond to the individual goals and needs of participants; and
h) be underpinned by the right of the participant to exercise control over his or her own life; and (choice in control is a core value of the NDIS. According to the Act, families have the right to use their funds for ABA therapy)
i) advance the inclusion and participation in the community of the participant with the aim of achieving his or her individual aspirations; and (this is the overarching goal of an EIBI program, and research on the effectiveness of EIBI suggests it is attainable for a large number of children with ASD)
j) maximise the choice and independence of the participant; and (this is the overarching goal EIBI program, and research on the effectiveness of EIBI suggests it is attainable for a large number of children with ASD)
k) facilitate tailored and flexible responses to the individual goals and needs of the participant; and
l) provide the context for the provision of disability services to the participant and, where appropriate, coordinate the delivery of disability services where there is more than one disability service provider.
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.
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.