With a recent video, the National Disability Insurance Agency (NDIA) released a bit of information about its NDIS Early Childhood Early Intervention (ECEI) Approach as it affects autistic children. Regrettably, The NDIS ECEI Approach falls well short of best practice early intervention (EI) for autistic children.
Autism Aspergers Advocacy Australia, a national grass-roots ASD advocacy group known as A4, applauds the NDIA’s intention to help children with disability into EI as quickly as possible. However, A4 is concerned that the NDIS ECEI Approach:
- avoids diagnoses and does not recognise the distinct nature of ASD and the distinct needs of autistic children;
- does not provide the impartial and comprehensive advice that parents need so they can make informed choices about EI for their autistic children;
- rejects expert advice that autistic children need intensive individualised ASD-specific and comprehensive EI; and
- diverts families from effective (evidence-based best practice) EI for their autistic children.
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A4, wrote to the NDIA expressing concerns about their ECEI Approach in relation to autistic children. Initially, the NDIA responded to A4 saying
The Agency acknowledges the concerns you have raised and will consider these in the ongoing development and implementation of the Early Childhood Early Intervention Approach.
There was no discernible effect from A4’s concerns. The NDIA ignored more recent letters (see here and here).
The NDIA’s ECEI Approach “connects” an autistic child to an initial service provider, called “a specialist early childhood access partner” (see https://www.ndis.gov.au/ndia-announce-first-nationally-consisten), an “Early Childhood Partner” (see https://www.ndis.gov.au/ecei.html) or “ECEI Partner” (see diagram above), who decides either to a) meet the child’s ECEI needs, or b) refer the child to become an NDIS participant with an individual plan.
These ECEI Partners have a conflict of interest in deciding which path to recommend for a child. Also, to meet the NDIA’s performance requirements, “ECEI partners” are each required to ensure fewer than 50% of children referred to them are assessed as eligible for the NDIS.
Under the NDIA’s ECEI Approach, “some helpful information” about EI for ASD comes typically with masses of “unhelpful information” and omits far too much impartial and crucial information. Generally, EI service providers share misinformation about the services that others offer. Since the NDIA cut the HCWA Autism Advisors, families of autistic children have nowhere to go for good advice. They are worse off under the NDIS … which is a broken promise.
The NDIA does not require that potentially autistic children are referred to an “ECEI partner” with knowledge of best practice for autistic children.
Best practice for an autistic child is intensive individualised ASD-specific and comprehensive EI.
- Intensive means 20+ or 25+ hours per week usually for 2 years or more… initially with a substantial level of one-on-one intervention. The intervention is supervised, but not necessarily delivered, by one or more clinicians who recruit, train and supervise a team of “technicians” delivering each child’s individual program. Unfortunately, very few people offering EI for autistic children in Australia are qualified or experienced with intensive programs.
- Individualised means each child’s program is tailored to the particular child; developmental progress is monitored and an evolving program specific to the child is maintained and delivered … not generic or group one-size-fits-all services as the NDIA apparently prefers.
- ASD-specific because research (and logic) show that autistic children do not develop and learn things the same way as other children. Autism is not simply developmental delay where a child may learn skills through exposure and increased practice. Autistic children typically need to learn some essential skills through different (from non-autistic children), often very direct and specialised, teaching techniques.
- Comprehensive means providing a whole program … with parent/family contributions complimenting the program. This means not advising poorly trained parents to themselves attempt delivering their children’s clinical programs after work on the kitchen table … or to recruit, train and manage casual staff to do it.
The NDIA and its preferred advisors are keen to have informal supports (parents, carers, etc.) delivering most EI but evidence to support the NDIA’s approach is minimal for autistic children.
In relation to ASD, the NDIA sought advice from Australian academics with little experience of intensive or comprehensive EI for autistic children. They wrote “Parent or peer training is promoted”, which the NDIA took as “parents need support to give their child an opportunity to gain and use the functional skills ...”.
But a respected source says
A recent meta-analysis comparing studies of parent- and clinician-implemented interventions for children with autism found significantly greater improvements in clinician-implemented studies with small to no effects in parent-implemented studies.
A primary goal for EI is for an autistic child to function effectively in mainstream school, ideally without extra support. Best practice does not make children “normal” … optimal outcomes are autistic children learning effectively at school and socialising comfortably in school and other settings (for example, see here, here or here).
A report of autistic children with optimal outcomes said the children with these outcomes “tended to get behavioral interventions”. Reviews of research into EI for autistic children (for example here) typically report that ...
Early intensive behavioral intervention (EIBI) is one of the most widely used treatments for children with autism spectrum disorder (ASD). ... We found that children receiving the EIBI treatment performed better than children in the comparison groups after about two years of treatment on tests of adaptive behavior (behaviors that increase independence and the ability to adapt to one’s environment), intelligence, social skills, communication and language, autism symptoms, and quality of life. The evidence supports the use of EIBI for some children with ASD.
Unfortunately, research has yet to identify who the “some children” are. In practice, children who don’t respond to one EI approach should try different approaches to see if another approach gets better outcomes for each child.
In relation to “other treatments and therapies” such as Speech and Language therapy or Occupational Therapy, etc. , research reviews (for example here) typically conclude
These other therapies have not been studied enough to know if they help or have any side effects. This does not mean that they do not work or are not safe. It just means that researchers do not have enough information to know for sure.
Some reviews (here for example) suggest that a transdisciplinary team of clinicians could deliver effective EI for autistic children. However, evidence supporting this hypothesis is minimal.
In Australia, most multi- or transdisciplinary teams providing service through the Helping Children with Autism package (2008-2016) were “teams of just one”; usually a speech therapist with little or no training in best-practice or evidence-based EI for ASD. These “teams” usually omit qualified behavioural expertise. Transdisciplinary teams in Australia usually take a parent delivery approach; they do not provide comprehensive EI services … so they are not providing best practice.
The challenge for families in Australia is to find anyone offering best practice EI for their autistic child. Psychologists, Speech and Occupational Therapists are not shown how to deliver intensive and comprehensive (best practice) EI programs for autistic children. No Australian University trains behavioural clinicians or other allied health professionals to deliver best practice EI for autistic children. Currently there are about 50 accredited BCBAs or BCaBAs in Australia (all of whom were trained overseas) and other allied health professionals are not trained or qualified to deliver comprehensive ASD-specific programs.
The lack of qualified clinicians isn’t just with EI … nor is it specific to ASD. Governments in Australia refuse to recognise behavioural qualification so behaviour support for people with problem/unwanted/challenging behaviour in education, disability, forensic services, etc. settings are denied essential behavioural services and supports.
From the start, the NDIA’s approach to EI for autistic children has been extremely inequitable. In order to get funding for best-practice EI, a family has to start out funding their child’s EI program themselves. Few families can afford it but this is the only way they can collect the evidence that the NDIA requires to fund best-practice EI for an autistic child.
The NDIA needs to better understand EI for ASD. Then it it should act to improve the training and accreditation of service providers … including behavioural specialists.
Families and the NDIA should recognise that some autistic children do not respond to EI. The whole community should bear the cost of EI, whether or not it works for an individual child.
With the NDIS, families are best to not be thankful for what the NDIA offers your autistic child. Try to get help and impartial advice so you can document clearly your child’s needs, especially best practice EI. Then be prepared to fight the NDIA (and the education system) to get funding for reasonable and necessary services and supports.
While the NDIA diverts families away from best practice EI for ASD, our autistic children will not be properly prepared for their education and subsequent adult life; the cost to families of autistic children and to the wider community will be enormous. The NDIA will fail in its key objective for its biggest participant group.
Bob Buckley
Convenor, Autism Aspergers Advocacy Australia (A4)
25/10/2016