NDIA Accountability Project

Submission 52 — Lizard Centre — Inquiry into services for people with Autism Spectrum Disorder

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Submission

No 52

INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM

DISORDER

Organisation: Lizard Centre

Date Received: 4 April 2016

Submission S052 Received 04/04/2016

Family and Community Development Committee

To Whom It May Concern:

The Family and Community Development Committee has been asked to inquire into, consider, and report on services for people with an autism spectrum disorder (ASD) in Victoria. The purpose of this letter is to address three questions posed by the committee:

  1. The availability an adequacy of services provided the Commonwealth, State, and local governments, with respect to early childhood intervention and education

  2. The adequacy of services to be provided under the National Disability

Insurance Scheme (NDIS)

  1. Evidence of social and economic costs of failing to provide adequate intervention

What is the Problem with Autism Treatment in Victoria?

Given the prevalence of ASD and the demand for treatment, the intervention market is booming. As government investments into autism treatment are increasing, so too are fad treatments. Primary care, allied health, social care, and education professionals have critical responsibility to protect families and individuals affected by ASD from fad and ineffective, controversial, or potentially dangerous interventions that are touted by self-proclaimed autism experts who are looking for financial gain (Dillenburger et al., 2014). Two key reports have recently highlighted the range of autism intervention that lack empirical support and thus should not be recommended or funded. These are the National Autism Centre’s National Standards Report and the recent Australian report commissioned by the NDIS titled Autism Spectrum Disorder:

Evidence-Based Evidence-Informed Good Practice for Supports Provided to

Preschool Children, Their Families and Carers

(http://www.ndis.gov.au/sites/default/files/Early%20Intervention%20for%20Autism%20research%20report.pdf). Unestablished interventions are those for which there is little or no evidence in the scientific literature that allows us to draw firm conclusions about their effectiveness with individuals with ASD. There is no reason to assume these interventions are effective. Further, there is no way to rule out the possibility these interventions are ineffective or harmful. Taken together, autism interventions that fall into the category of unestablished include:

  • Autism-Assisted Animal Therapy
  • Auditory Integration Therapy
  • Concept Mapping
  • DIR/Floor Time
  • Facilitated Communication
  • Gluten-Free/Casein-Free Diet
  • Miller Method
  • Movement-Based Intervention
  • Music Therapy
  • Rapid Prompting Method (RPM)
  • SENSE Theatre Intervention
  • Sensory Integration Therapy
  • Shock Therapy
  • Social Behavioural Learning Strategy
  • Social Cognition Intervention
  • Social Thinking Intervention
  • Son Rise It should be noted that several unestablished interventions continue to be widely recommended by primary care, allied health, social care, and education professionals in Victoria, often at a high cost. Unestablished interventions that may be recommended and practiced in Victoria include auditory integration therapy, DIR/Floor Time, sensory integration therapy, and dietary interventions (other interventions on this list are likely practiced as well). Thus, we feel that primary care, allied health, social care, and education professionals are not doing enough to protect consumers from fad and ineffective, controversial, or potentially dangerous interventions. In fact, the newly released NDIS Early Childhood Early Intervention (ECEI) Approach (2016; http://www.ndis.gov.au/sites/default/files/documents/Research/NDIA-ECEI-Approach-1.pdf) illustrates this problem. On page 5, the authors provide the example of Sam, a two and half-year-old with behaviours of concern. In this example, Sam and his family met with a newly appointed NDIS access partner, who referred the family to an occupational therapist to “do some work on touch and language.” The authors then go on to describe a type of intervention involving the application of firm pressure/touch that would be classified as sensory integration therapy, provided by the occupational therapist. However, sensory integration therapy is not scientifically supported and has, in fact, been shown to be ineffective in published studies (citation). In light of this, we must conclude that this type of intervention is unlikely to produce any meaningful outcomes for the child with ASD, and would be an inappropriate use of NDIS funds.

What Works for Autism?

Virtually all interventions for autism that are classified as established are based on the scientific discipline of applied behaviour analysis (ABA). ABA is the application of the principles of learning, derived from experimental psychology research, to systematically change socially significant behaviours. In addition, within the field of ABA, researchers and practitioners must demonstrate that the interventions used are responsible for the observable improvement in behaviour (and rule out that behaviour change occured as a result of an uncontrolled variable). ABA methods are effective for increasing adaptive behaviours, reducing interfering maladaptive behaviours, teaching new skills, and generalizing behaviours to new environments or situations. The effectiveness of ABA-based interventions in ASDs has been well documented through 5 decades of research by using a variety of research methods, including single-subject designs, randomized controlled clinical trials, meta analyses, and cost benefit analyses. Children who receive early intensive behavioural treatment based on the principles of ABA have been shown to make substantial and sustained gains in IQ, language, academic performance, and adaptive behaviour, and their outcomes have

been significantly better than those of children in control groups (including no treatment, low intensity treatment, or non-ABA treatment groups).

Healthcare funders and managers, as well as primary care, allied health, social care, and education professionals, must be able to recognise the core characteristics of ABA (http://bacb.com/wp-content/uploads/2015/07/ABA Guidelines for ASD.pdf), which include:

An objective assessment and analysis of the client’s condition by observing how the environment affects the client’s behaviour, as evidenced through appropriate data collection

Importance given to understanding the context of the behaviour and the behaviour’s value to the individual, the family, and the community

Utilization of the principles and procedures of behaviour analysis such that the client’s health, independence, and quality of life are improved

Consistent, ongoing, objective assessment and data analysis to inform clinical decision-making

Early intensive behavioural intervention (EIBI), an evidence-based, comprehensive intervention for ASD based on the principles of ABA, has been shown to be associated with the most dramatic improvements in prognosis for children with ASD (Eldevik, Hastings, Hughes, Jahr, Eikeseth, & Cross, 2009; Lovaas 1987; Peters Scheffer, Didden, Korzilius, & Sturmey, 2011). The goal of EIBI is to change a child’s learning trajectory so that the child’s rate of learning approaches that of a typically developing peer. EIBI is characterized by the following:

Early: Intervention begins as soon as a diagnosis is confirmed. EIBI may produce the greatest gains when intervention is started before age 2

Intensive: Intervention is provided for no less than 20 hours per week, with studies recommending 30-40 hours per week

Behavioural: Intervention is focused on the objective identification of skill deficits and behavioural excesses, and the use of teaching tactics derived from ABA to build functional skills.

Interventions for ASD based on the principles of ABA are now seen as medically and educationally necessary in the USA. In most states, healthcare providers are mandated to cover the cost of early intensive behaviour intervention, and public and private schools require and fund the provision of ABA in special education classrooms. In other words, ABA is considered “business as usual” in the education and treatment of children with ASD in the USA.

Who has Endorsed ABA?

Applied behaviour analysis is now widely endorsed. Dillenburger (2016) provides an overview of these endorsements:

As early as 1999, the Surgeon General endorsed ABA-based interventions:

Thirty (now, 45+) years of research demonstrated the efficacy of applied behavioural methods in reducing inappropriate behaviour and in increasing communication, learning, and appropriate social behaviour (p.164)

More recently, the New York State Department of Health (2011) recommended:

That principles of applied behaviour analysis (ABA) and behaviour intervention strategies be included as important elements in any intervention program for young children with autism (p.33)

The California Department of Education and Developmental Services (1997)

recognised that:

In areas such as social engagement, language, coping, and reduction of difficult behaviours… Applied behavioural analysis is usually needed to assist a child to gain skills and reduce negative or undesirable behaviours (p.10)

The Federal U.S. Office of Personnel Management responsible for all federal government employees concluded that ABA-based interventions should be covered not only for educational but also for medical reasons:

Based on ample scientific and empirical evidence, ABA therapy qualifies as a medical treatment, rather than purely educational (Bahsoun, 2012, p.1)

In Canada, ABA-based interventions are supported, for example by the Ontario Department of Education Policy/Program Memorandum (PPM-140, 2007) that:

Support(s) incorporation of ABA methods into school boards’ practices … The use of ABA instructional approaches may also be effective for students with other special education needs (p.1)

The Maine Administrators of Services for Children with Disabilities confirmed their support in the Report of the Autism Task Force (Baldacci & Harvey, 2009):

It is important to note that ABA is frequently perceived to be synonymous with discrete trial teaching. However, ABA is comprised of a broad scope of empirically derived behavioural principles used in interventions…(p.25)

In Australia, ABA-based interventions have also been endorsed. In 2011, Prior, Roberts, Rodger, and Williams published their report titled A Review of Research to Identify the Most Effective Models of Practice in Early Intervention for Children with Autism Spectrum Disorders. This report was prepared funded by and prepared for the

Australian Government of Families, Housing, Community Services and Indigenous

affairs (FaCHSIA). ABA was the only intervention to be classified as eligible for funding based on established research evidence:

The findings of the current literature review support the findings of previous reviews. Behaviourally based interventions, and specifically those that are intensive (often referred to as applied behavioural analysis (ABA) or early

intensive behavioural intervention (EIBI)), continue to indicate some positive outcomes for some children in a range of areas including cognitive skills, communication, and adaptive behaviour.

Following in the footsteps of Roberts et al., The Helping Children with Autism (HCWA) package endorsed ABA as the only intervention that is eligible for funding based in established research evidence.

In addition, the Raising Children Network

(http://raisingchildren.net.au/articles/applied_behaviour_analysis_th.html) gives ABA a firm rating of established, noting that research consistently shows positive effects.

What do Cost-Benefit Analyses Tell Us About Autism Treatment?

For individuals with ASD and a co-morbid intellectually disability, the lifetime cost society is thought to be in excess of $1 million (Buescher, Cidav, Knapp, & Mandell, 2014). However, the quality of life cost to families is much greater (Dillenburger, 2016). 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 (Rosenblatt, 2008).

In their review of cost benefit analyses of EIBI, Cross, Coyne, Broberg, and Lubbers (2013) determined that the cost savings substantially exceeds the early intensive treatment cost for a 3-year-old child with autism or ASD. Some reports have found a home-based program to be less expensive than alternative non-ABA based special school placements (Columbia Pacific Consulting, 1999).

Synergies Economic Consulting carried out a cost benefit analysis of providing EIBI to children with ASD (www.synergies.com.au). The authors designed three groups to capture the population of children with autism. The three groups were described as follows:

Group 1 – children with severe intellectual impairment – likely to be non verbal and suffer from significant behavioural issues and anxieties (estimated to account for approximately 20% of the children that would receive early intervention);

Group 2 – children with mild to moderate intellectual impairment – likely to experience difficulties with language and communication, particularly in social settings (estimated to account for approximately 60% of the children that would receive early intervention); and

Group 3 – children with High Functioning Autism – while not suffering from intellectual disabilities, individuals in this group can experience difficulties in other areas that can adversely impact long-term outcomes in key areas (estimated to account for approximately 20% of the children that would receive early intervention).

The authors applied a cost-benefit analysis to each group, and determined that, with

EIBI, the average total economic benefit per child exceeded $1 million.

Key area               Group #1                   Group #2                   Group #3

outcomes

Without EI       With EI       Without EI       With EI       Without EI       With EI

Unemployed           n/a              n/a         75%         30%         30%        5%

Living independence

FT care          80%         40%         30%         10%        0%         0%

Shared accom.     20%         60%         65%         65%         30%         10%

Independent/su        n/a              n/a         5%         25%         30%         20%

pervised living

Independent           n/a              n/a         0%         0%         40%         70%

Note: ‘n/a’ means the outcome is assumed to be not applicable to a child in this group. Source: Proportions provided by the RAG.

Total economic benefit of early intervention for a cohort of children with autism

Average benefit per child         No. Children           Total economic benefit

Group #1                           $1,297,000                237 (20%)                $307,500,000

Group #2                           $1,202,000                711 (60%)                $855,200,000

Group #3                           $747,000                 237 (20%)                $177,100,000

Total                                                    -                        1,185                  $1,339,800,000

Note: Totals may not add due to rounding. Source: Synergies modelling.

Jacobson, Mulick, and Green (1998) also developed a cost–benefit analysis model of EIBI based on the range of outcomes reported by previous group studies. The authors applied representative costs from Pennsylvania, including costs for educational and adult developmental disability services, in a cost-benefit model, assuming average participation in EIBI for three years between the age of 2 years and school entry A range of outcomes were assumed, with some children ultimately participating in regular education without supports, some in special education (partial effects), and some in intensive special education (minimal effects) At varying rates of effectiveness, the model proposed by Jacobson et al estimates that cost savings as a result of participating in EIBI range from $187,000 USD to $203,000 USD per child for ages 3-22 years, and from $656 000 to $1,082,000 per child for ages 3-55 years. In this study, the authors assumed that there would be differences in initial costs of $33,000 and $50,000 per year for EIBI, but found that these differences had a modest impact on cost-benefit balance. The cost of EIBI was greatly outweighed by estimated savings

Conclusions

Last year, the CEO of the NDIS David Bowen stated that our current understanding of what works for autism is limited. This is wrong. Today, ABA is widely recognised as a safe and effective treatment for ASD. To ensure that all children with ASD in Victoria have access to effective and safe intervention, we must do the following:

  • We must ensure that access partners appointed by the NDIA able to understand the core features of autism interventions that are classified as established. Access partners must also understand the core features of autism interventions that are unestablished, and should protect families and

individuals affected by ASD from fad and ineffective, controversial, or potentially dangerous interventions.

  • We must also provide information to primary care, allied health, social care, and education professionals to help them distinguish between established and unestablished autism interventions. Again, these professionals have an ethical responsibility to ensure that families and individuals affected by ASD are protected from fad and ineffective, controversial, or potentially dangerous interventions.

  • The Victorian government should support the growth of applied behaviour analysis as a distinct field of professional practice in Australia. ABA is a specialized behavioural health treatment approach. Most graduate programs in psychology, education, or allied health do not provide training in this discipline. There, for it important that the Victorian government understands the process by which ABA professionals are trained and credentialed. The Behaviour Analyst Certification Board (BACB©) oversees the credentialing of behaviour analysts, and more information can be found at http://bacb.com. We must ensure that behaviourally based interventions, such as early intensive behavioural intervention, are supervised by credentialed behaviour analysts. Behaviour analysts should also be invited to work on interdisciplinary teams and/or sit on committees with other professionals who provide services to people with ASD and their families.

  • Allied Health professionals, psychologists, and educators should also be aware of the practice guidelines for healthcare funders and managers published by the BACB©, which can be found here: http://bacb.com/wp-content/uploads/2015/07/ABA_Guidelines_for_ASD.pdf

  • The Victorian government should also support the growth of the field of applied behaviour analysis in Australia by supporting the development of graduate training programs in ABA. Master’s of Science degree programs in applied behaviour analysis have been growing worldwide to meet the demand for qualified teachers and practitioners. Currently, there are no course sequences in Australia that meet the BACB© requirements for sitting the board certification exam. For a full list of programs worldwide that meet the BACB© requirements, see http://info.bacb.com/o.php?page=100358

  • Finally, we must ensure that we spend smarter. Cost benefit analyses have allowed us to substantiate evidence of effective interventions. We know that best outcomes can be achieved when a diagnosis of autism in provided early (before age 3), when intervention begins as soon as a diagnosis is confirmed, when intervention is intensive (20+ hours per week), and when intervention is focused on teaching new adaptive life skills. We must provide the necessary funding to allow families from all socio-economic and cultural backgrounds to access early intensive behavioural intervention.

Lizard

: Centre

I hope to continue to work collaboratively with the committee to ensure that we achieve the goals proposed above.

Kindest Regards,

Dr. Erin Leif, PhD, BCBA-D

National Associate Director

Lizard Centre

www.lizardcentre.com

References

Bahsoun, P. (2012). Government expands insurance coverage of ABA therapy for treatment of autism. U.S. Office of Personnel Management. Retrieved from www.examiner.com/article/governmentexpandsinsurancecoverageofabatherapyfortrea tmentofautism

Baldacci, J.E., & Harvey, B. M. (2009). Children’s Services Evidence–Based Practice

Advisory Committee. Maine Department of Health and Human Services & The Maine

Department of Education. http://www.maine.gov/dhhs/ocfs/cbhs/ebpac/

Buescher, A. V. S., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of Autism

Spectrum Disorders in the United Kingdom and the United States. JAMA Pediatrics,

Jun 9. doi. doi:10.1001/jamapediatrics.2014.210

California Department of Education and Developmental Services (1997). Best

Practices for Designing and Delivering Effective Programs for Individuals with Autistic Spectrum Disorders (http://www.feat–fmc.org/assets/cabestprac.pdf)

Cross, S., Coyne, P., Broberg, E., & Lubbers, J. (2012). The Adverse Effects and

Societal Costs of Denying, Delaying, or Inadequately Providing EIBI for Children

with Autism (ccbainfo.org)

Dillenberger (2016). The use of ABA interventions in the evidence-based management of autism spectrum disorders. Letter with parts taken from a chapter published M. Fitzgerald. Autism. Intech. SBN 97889538518412482. http://knospe-aba.com/cms/images/stories/pdf/1_Evidence_for_ABA-based_interventions.pdf

Dillenburger, K., Röttgers, H. R., Dounavi, K., Sparkman, C., Keenan, M., Thyer, B.,

& Nikopoulos, C. (2014). Multidisciplinary Teamwork in Autism: Can One Size Fit

All? The Australian Educational and Developmental Psychologist, 30, 1–16.

Eldevik, S., Hastings, R., Hughes, C., Jahr, E., Eikeseth, S., & Cross, S. (2009). Meta analysis of early intensive behavioural intervention for children with autism. Journal of Child and Adolescent Psychology, 38, 439-450.

Jacobson, J., Mulick, J., & Green, G. (1998). Cost–benefit estimates for early intensive behavioral intervention for young children with autism—general model and single state case. Behavioral Interventions, 13, 201–226.

Lovaas, O. I. (1987). Behavioral treatment and normal intellectual and educational functioning in autistic children. Journal of Consulting and Clinical Psychology, 55, 3 9.

National Autism Center (NAC). (2009). The national standards project: Addressing the need for evidence based practice guidelines for autism spectrum disorders. Randolph, MA: National Autism Center.

Peters-Scheffer, N., Didden, R, Korzilius, H. & Sturmey, P. (2011) A meta-analytic

study on the effectiveness of comprehensive ABA-based early intervention programs for children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 5, 60-69.

The New York State Department of Health (1999) Guidelines: Autism/Pervasive

Development Disorders, Assessment and Intervention for Young Children with

Autism Chapter IV – Behavioral and Educational Approaches. http://www.health.state.ny.us/community/infants_children_early_intervention/disorders/autism/

US Surgeon General (2000). Surgeon General’s Report on Mental Health –

subsection on Autism. http://www.surgeongeneral.gov/