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Are you planning your first NDIS meeting and not sure what to expect? Don’t worry, we’ve got you covered. We have created a list of tips to answer any big questions we are frequently asked to help make your first meeting as easy as possible.
Tip #1 A clear plan helps you have a clear mind.
It’s important to go into your first NDIA meeting with a clear plan. We don’t expect you to have everything mapped out but it is useful to know what therapies you will use your funding for and the daily challenges that your child has (convey to them what a ‘bad’ day is like for your child). It’s also important to be adamant that ABA therapy is the one for you, or at least high on your list of therapies (especially if behaviour is a huge barrier for your child).
Tip # 2 Tell them what hasn’t worked.
It is important to mention what hasn’t worked. Why? If you mention you have already tried cheaper alternatives like Speech or Occupational Therapy prior to starting ABA and that it did not yield the same result as ABA then it will (hopefully) assist with eliminating this hurdle. It will help if the diagnosing Speech Pathologist or Psychologist recommend ABA.
Tip # 3 Have assessments prior to the meeting.
Get an assessment done on your child to convey to the planner the “gaps” in your child’s abilities and why intensive ABA (20 hours per week as a minimum) is needed.
Tip # 4 The NDIA commissioned report is gold.
Take the NDIA commissioned report with you (attached – see highlighted pages 34 and 35) it should help you get the level of funding required for the minimum hours recommended in the report (15-25 hours per week).
Tip # 5 Be prepared.
Have your NDIS portal registration complete before your plan is approved (you must have a MyGOV account prior). That way you won’t have to wait for your child’s plan to be approved to have access to the portal log in, only an acceptance into the scheme.
Tip # 6 The squeaky wheel gets heard!
We are all very aware of the workload that the NDIA is currently experiencing, but you need to keep in contact with them regularly. If you have a planner allocated, email them. If you are pre meeting, phone them. Don’t be afraid to put in a complaint. If at any stage you need help, there are Disability advocates that can help and support you. Also, get in touch with your local MP- They all have a contact within the NDIA to act on your child’s behalf. We have found that this has been very useful in getting replies from the NDIA.
Tip # 7 Make it clear, ABA is the way.
The NDIA will likely want you to try cheaper alternatives to ABA. These other therapies have been reviewed by the Association for Science in Autism Treatment website
https://www.asatonline.org/for-parents/learn-more-about-specific-treatments/ which shows whether it’s evidence-based, promising but not yet recommended, or something to avoid. Make sure you use this as rebuttal when they try to suggest you try other therapy instead of ABA.
Tip # 8 You need to know what ABA can change.
You will need to prove that ABA can help with:
-Increasing your child’s functional capacity in various areas.
-Increasing emotional regulation.
-Increasing social skills.
-Increasing communication.
-It’s cost effective compared to long term effect of no early intervention; Researchers (Jarbrink & Knapp, 2001, and Jacobsen et al, 1998) have assessed the costs of autism over a child’s lifetime. The benefits of doing early intensive behavioural intervention (EIBI) at a young age ranges from a saving of $656,000- $1,082,000 per child over their lifetime. Funding early intervention with young kids with ASD will save the government millions of dollars in the long run.
-Teaching them self-care.
-Beanstalk’s hourly rates are value for money compared to other providers.
-Talk about your child’s learning trajectory, and how each goal impacts up this.
-It’s effective and beneficial; Prove this by getting started straight away so you have proof that it achieves goals quickly.
Tip # 9 The limit does not exist.
It is not $16k. There is no limit. Don’t let them tell you otherwise. You need to know the research, and cite it in your funding application. Here are some references that prove ABA’s efficacy:
No other treatment has more evidence for autism
Title: Autism spectrum disorder: Evidence-based/evidence-informed good practice for supports provided to preschool children, their families and carers.
Authors: Jacqueline M. A. Roberts & Katrina Williams (2016)
For further reading (meta-analyses, summaries) on how ABA is the most effective treatment
available, please see the below as a sample of the research available:
Title: Intensive Early Intervention using Behavior Therapy is the Single Most Widely
Accepted Treatment for Autism
Author: Eric V. Larsson (2008), Executive Director, Clinical Studies, Lovaas Institute for
Early Intervention, USA
Summary: A very useful compendium of the research backing ABA
Title: Applied Behavior Analytic Intervention for Autism in Early Childhood – Meta-analysis,
Meta-regression and Dose-response Meta-analysis of Multiple Outcomes
Author: Virues-Ortega (2010), Published in Clinical Psychology Review
Summary: Comprehensive ABA intervention leads to (positive) medium to large effects in
terms of intellectual functioning, language development, acquisition of daily living skills and
social functioning in children with autism.
Title: Autism and ABA – The Gulf Between North America and Europe
Author: Keenan et al (2015), Queen’s University, Belfast, Published in the Review Journal of
Autism and Developmental Disorders
Summary: How European children have been denied ABA, despite its prevalence in the US.
The same can be applied to children of Australia currently.
Title: Using Participant Data to extend the Evidence Base for Intensive Behavioral
Intervention for Children with Autism
Author: Eldevik et al (2010), Published in the American Journal of Intellectual and
Developmental Disabilities
Summary: Great ABA meta-analysis – “More children who underwent behavioural
intervention achieved reliable change in IQ (29.8%) compared with 2.6% and 8.7% for
comparison and control groups, respectively, and reliable change in adaptive behaviour was
achieved for 20.6% versus 5.7% and 5.1%, respectively”.
Title: A Comparison of Intensive Behavior Analytic and Eclectic Treatments for Young
Children with Autism
Author: Howard et al (2005), Published in Research in Developmental Disabilities
Summary: ABA is better than eclectic, even when eclectic methods are used to the same
intensity.
Title: Early Intensive Behavioral Intervention: Outcomes for Children with Autism and their
Parents after two years
Author: Remington et al (2007), Published in American Journal of Mental Retardation
Summary: This report, produced by the charity Research Autism describes how early
intervention using structured teaching based on the principles of ABA led to significant,
positive changes amongst children with autism, including gains in intelligence, language and
daily living skills, as well as motor and social skills.
Good luck from the Beanstalk family.