NDIA Accountability Project

Inquiry into services for people with autism spectrum disorder Submission from Autism Partnership

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Submission
No 142

INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM DISORDER

Organisation: Autism Partnership

Date Received: 2 May 2016

Submission S142; Received 02/05/2016 Family and Community Development Committee

2. Concerns with current service provision

i. Lack of quality and evidence base of current funded services

Currently the NDIS continues to fund low intensity eclectic models of intervention that show no evidence of significant impacts on children and families. For too long the expectation of what services will deliver and the outcomes of the children involved have been far too low. We have found no scientific analysis of these programs on which the current funding model seems to have been established.

The most common package for a child receiving early intervention funds will involve low intensity Speech Therapy, Occupational Therapy, Psychology and possibly some eclectic style group intervention.

Despite this being the most common recommendation there is no body of evidence supporting general (eclectic) high or low intensity programs. We can find no high quality research evidence of its effectiveness, its impact on behaviour, cognitive ability, daily living skills and thus no evidence to suggest that this type of intervention leads to any reduction in the need for supports over time- the very purpose of early intervention and the NDIS.

It seems that expectations remain low and that simply delivering a ‘service’ has been enough. There has been no expectation that these services would lead to any great improvement in a child’s future. The agencies providing these services have certainly not been required to measure impact or child outcomes in a standardized and objective manner. Currently agencies are required to report against the child’s individual goals, this is important however it is so subjective in nature that it is difficult to draw any conclusions about effectiveness of intervention. There is currently no requirement for standardised assessments to measure progress.

ii. Prevention of true choice and control through the failure to provide evidenced based information

Evidence based information is not routinely provided to families of children with autism. Very few families we meet have been directed to the Guidelines for Good Practice. Although there are valuable online resources that parents access such as the Raising Children Network, it appears that in many cases health professionals and NDIA planners are failing to provide information to families that may help them to consider the most current evidence and make an informed choice.

3. Summary of the evidence to date

In the Prior & Roberts (2012) Australian research review and published guidelines for good practice in ASD, it was noted that Early Intensive Behavioural Intervention (EIBI) is the only intervention with an “effective based on established research evidence” rating. Multiple studies have demonstrated the efficacy of EIBI and a meta-analysis concluded that EIBI is the intervention of choice for children with autism.

Individual studies and meta-analyses as to the efficacy of EIBI have demonstrated:

a. Statistically and clinically significant increases in cognitive skills and receptive language

b. Statistically and clinically significant increases in the rate at which developmental milestones are being achieved c. Statistically and clinically significant differences between children receiving EIBI and generic programs, with the EIBI group achieving significant improvements in IQ and the acquisition of functional daily living skills d. Statistically and clinically significant differences between children receiving EIBI and non-intensive eclectic programs (after 14 months of intervention), with the EIBI group achieving significant improvements in IQ, receptive and expressive language, everyday functional skills and learning rates e. Persistence of gains made (in a follow up study with children in late primary school years) f. Positive participation outcomes with children being able to enter mainstream schools.

In 2012 Roberts & Prior concluded that the evidence has “…shown the efficacy of IBI for the treatment of children with ASD” (p.261).

There is no similar body of evidence supporting general (eclectic) high or low intensity programs. The evidence does not support low intensity behaviourally-based intervention.

Given the evidence as to efficacy of EIBI, there are liability savings to be realised by funding EIBI to the evidence base and a best practice model

4. What is Early Intensive Behavioural Intervention?

The provision of EIBI is designed to maximise the participation of individuals in everyday life. Intervention directly targets the child’s ability to communicate, socialise, be included in daily activities, be an engaged and productive family member, and to become an independent learner for life.

Key components of EIBI include:

Learning How to Learn

Individuals who participate in an EIBI program are taught how to learn. Initially, learning readiness skills such as paying attention, listening and responding, completing simple tasks, being aware of others and the environment, and understanding the link between behaviour and consequences are targeted.

Over time, each child is guided to learn from the broader world and to understand the natural cues that typical children learn from (e.g., learning from peers, listening to teachers in class, learning through observation of events in the environment). As the child approaches Kinder and school age, group learning becomes an important and relevant skill to master. The EIBI program includes curriculum designed to help the child learn how to learn in a group setting. The goal of EIBI is that the child becomes an independent, life-long learner.

Intensity of intervention

Intensity of learning is a key component of EIBI. This includes the number of intervention hours each week, as well providing a learning environment that is rich in the number of learning opportunities provided to the child. Australian guidelines recommend at least 15-25 hours per week of intervention. Intervention may be provided in a one-to-one learning format or small group, depending on the learner.

Almost all children will receive one-to-one intervention in their first one to two years of EIBI. The focus in EIBI is helping the child to make as much progress as possible in a short period of time, before they go to school. As such, EIBI provides a learning environment as rich as possible in learning opportunities. When we work with children one-to-one, we can provide hundreds of learning opportunities per hour. Moving to a small group format too early may rapidly diminish how many opportunities a child is able to access learning. The decision on moving to a group learning format must be made on an individual basis and based upon the child’s skillset, not on an assumption that the child is of a certain age and so should be placed in a group setting.

Some children are able to move to a small group-learning format within their first years of EIBI. This decision is made only if the movement to group enriches, rather than depletes, the child’s learning opportunities. An important pre-requisite skill for group participation is the child’s ability to learn at an equally-paced rate as within the one-to-one setting.

Program for generalisation

Many children with ASD struggle to transfer the skills they learn in one setting and apply then to another setting. Similarly, they may learn something with one person but not do it with another person in their life. Provisions must be made to ensure that generalisation is not assumed, but is actually programmed into the child’s intervention program. There are numerous ways to ensure this transfer of skills across settings and people. A good quality EIBI program will address this by involving parents, extended family, educators and other members of the community who interact with the child, and provide a structured and comprehensive generalisation plan.

Accommodation versus habilitation

EIBI is designed to teach the child new skills and behaviours. If a young girl with ASD won’t wear a hat at the beach, our focus will be on teaching her to wear a hat go to the beach with her family, rather than avoiding the beach all together. The emphasis is on helping the individual to acquire skills that help them get along in life, rather than narrowing and restricting how much the child, and family can participate in everyday activities.

Data-driven decision making

Monitoring a child’s progress through capturing and analysing data is a hallmark of the EIBI approach. All EIBI programs have comprehensive data systems in place. Data is often taken daily on all skills and behaviours. The team, including the family, are able to see at all times the progress the child is making. Taking such detailed and comprehensive data allows the practitioner to adjust the intervention plan, report objectively to the family and NDIA regarding the child’s progress.

Functional & comprehensive curriculum

Designing each child’s individual EIBI program involves discussion with the family regarding their goals for their child. An EIBI program will encompass all developmental domains a child needs to learn. Often, the curriculum is developed from the observations, assessment

and data analysis completed by the Behaviour Consultant. For example, if a father wants to decrease his son’s tantrums, the Behaviour Consultant will work with the family to determine how, when and why the tantrums occur. A program will then be put in place to teach the child alternate, replacement behaviours he can use instead of tantrums. Similarly, if the same child has a desire to play with others but doesn’t know how to join in games with his peers, the family and Behaviour Consultant will work on a plan to teach the child the skills he needs to perform this new skill

5. Risks of failing to provide evidenced based intensive intervention

There are a number of risks associated with the failure to provide evidenced based EIBI

  1. There is a risk of the scheme failing to realise value for money (or conversely wasting money) in spending on low intensity generalised (eclectic) early childhood intervention programs for children with ASD.
  2. There are medium term costs and liability risks associated with a need for greater support at school in the absence of effective interventions, particularly related to continence and behaviour.
  3. There are long term liability risks associated with the support needs of adults, with autism being higher than they would have been had EIBI been funded.
  4. There is a risk of the projected financial returns to the Australian community not being realised by reason of:
    • Continuing high rates of unemployment amongst parents of children and young people with autism
    • People with autism not being employed, or being under-employed.
  5. There are risks of people with autism not experiencing “… the same right as other members of Australian society to realise their potential for physical, social, emotional and intellectual development.” (p. 5)

6. Recommendations: A strategic response to improving the quality of early intervention services

In order to provide the best possible outcomes for children and their families and in order to reduce the need for support overtime we recommend the following actions

That the Victorian State Government

a. Notes the risks to individual outcomes and the sustainability of funding posed by the increasing rates of participants with autism. b. Notes its capacity to mitigate this risk by funding interventions for young children (age 0-6 years) with autism that are reasonable with reference to value for money, evidence-base, and benefits achieved. c. Notes the lack of empirical evidence supporting eclectic (general) early childhood intervention for children with autism. d. Notes the lack of empirical evidence supporting low intensity behaviourally-based intervention for children with autism. e. Notes the empirical evidence supporting early intensive behaviourally-based intervention (EIBI) as the most efficacious of interventions for children with autism.

f. Establishes early intensive behaviourally-based intervention (EIBI) as a funded intervention support for young children with autism. g. Funds EIBI to a reasonable cost framework consistent with the minimum intensity of intervention required for efficacy of intervention (20 hours per week) expert staffing, a ratio of one therapist to one child, allowance for individual child clinical supervision and monthly reviews with parent/s or primary carers. h. Requires providers that wish to deliver EIBI to demonstrate that their program: i. Adherence to the Australian Guidelines of Good Practice ii. The use of planned, educational, interventions based on behavioural principles iii. A comprehensive approach addressing learning needs across all domains including language and communication, behaviour, social, emotional, self-care, play, community access and interpersonal relationships iv. The incorporation of a generalisation phase where skills are generalised to children’s natural environments (e.g., day care, kindergarten, shops, playgrounds, birthday parties) i. Requires providers to participate in a standard outcome reporting model inclusive of the following standardised measures administered pre and post each twelve month period of intervention: i. Cognitive/Developmental: Mullen’s Scale of Early Learning or Wechsler Preschool and Primary Scale of Intelligence III ii. Adaptive Behaviour: Vineland Adaptive Behaviour Scale (Parent/Caregiver) iii. Challenging Behaviour: Developmental Behaviour Checklist iv. Language and Communication: Preschool language Scale or CELF4. j. Funds each child at the highest level of funding for their first twelve months of intervention. k. Reviews the outcomes for children at the end of each twelve month episode with reference to: i. The mandated standardised measure/s (j.) ii. Family reports (to a standard template) that address functional and participation outcomes and iii. Likely continuing return on investment to the scheme.

  1. Determines the subsequent funding for a given child based on the outcomes at the time of the annual review and individual indictors of need. m. Require health professionals and NDIA planner staff to provide families with up to date evidence based information through the provision of standard written information or internet links.

References

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