how broken is Government policy on early intervention for ASD?

Subject: letter from Assistant Minister - MC17-001051
Date: Mon, 11 Dec 2017 12:26:40 +1100
From: Bob Buckley (A4 Convenor) <convenor@a4.org.au>
Organization: Autism Aspergers Advocacy Australia (A4)
To: The Hon Jane Prentice MP <jane.prentice.mp@aph.gov.au>
CC: The Hon C Porter MP <minister@dss.gov.au>, Ms Prue Car MP <londonderry@parliament.nsw.gov.au>, The Honourable Ms Jenny Macklin MP <jmacklin.mp@aph.gov.au>, senator.carol.brown@aph.gov.au

The Hon Jane Prentice MP,
Assistant Minister for Social Services and Disability

Dear The Hon Jane Prentice MP

Autism Aspergers Advocacy Australia, known as A4, recently received a copy of a letter (MC17-001051, 16/11/2017) that you sent to Ms Prue Car MP. The Hon Ms Car MP passed the letter on to her constituents. Eventually, A4 received a copy.

Your letter said ...

With regard to the level of support the NDIS can provide for early intervention, the NDIA will review the level of support required on a case-by case-basis, including requests for intensive support such as Applied Behavioural Analysis (ABA) therapy. In order for the NDIA to make a decision, evidence is required on how intensive supports like ABA will result in outcomes for the individual participant. The evidence must detail how the support will deliver outcomes above those that are ordinarily achieved through less intensive support. If a participant has already received a period of intensive support, the NDIA requires evidence of the support's efficacy, including detail of how the support was delivered and what outcomes have been achieved.

Your policy, described above, is concerning because ...

  1. it denies most autistic children access to necessary supports that relevant experts consistently and repeatedly describe as evidence-based and good practice early intervention; instead, your policy prefers "less intensive supports" that are largely ineffective, not evidence-based and are considered less-than-good practice;  
  2. cost modelling shows that the approach you have taken for autistic children is the most expensive in the long-run and has particularly poor outcomes for autistic adults, their families and the community generally.
  3. in practice the NDIS does not operate as you describe (see here and here); an autistic child's NDIS plan is unlikely to include good practice early intervention even when the family provides the evidence you say is required.
  4. your policy is contrary to expert advice that the Government obtained in recent years about best practice and good practice early intervention for autistic children. Government sought and received reports in 2006, 2011 (MS Word version and Early Intervention Table) and then in 2016. The Government published these reports on various government websites. Experts in ASD advised consistently that each autistic child needs a comprehensive program of individualised intensive ASD-specific early intervention. The ASD community agrees as was evidenced by the 1000 hours campaign. Alarmingly, the Australian Government chooses to reject/ignore most of the expert advice it obtained on early intervention for autistic children.
  5. the NDIA says "three key research pieces form the basis of the ECEI approach" (see here) and selected bits from the latest advice on good practice for autistic children merely "informed the ECEI approach". The NDIA's ECEI Approach promotes/emphasises parent-delivered intervention/therapy (support?) in "natural settings". Only one of the "three key research pieces", the KPMG 2011 document, mentions autistic children. It reports on Aspect's Building Blocks program, a family-centred "less intensive support" for autistic children, observing that "Children in the centre-based program has the largest improved [Vineland score] followed by the wait list, the home-based group had the smallest increase" (the wait-list group were untreated, the NDIA's ECEI Approach most resembles the home-based group). Outcomes for all groups were well short of those achieve through good practice (requiring sufficient program intensity) for autistic children. The basis for the NDIA's preferred ECEI approach reports that the NDIA's approach has the least benefit for autistic children. Also, a Cochrane review concluded "important outcomes such as other aspects of children's language, children's adaptive skills and parent stress did not show change" from parent-delivered supports. All this means that the ECEI Approach is not evidence-based for autistic children.
  6. A4 cannot find your policy documented anywhere other than in this letter. We would like more detail, such as what outcomes "are ordinarily achieved through less intensive support".
  7. A4 is not aware that the Government applies this or a similar policy to therapies for non-autistic children, such as a cochlea implant for deaf children.
  8. Government should not require a family to furnish proof that good practice is effective for their child since there is already a large body of evidence relevant to autistic children, a major participant group in the NDIS (note: over 25% of NDIS participants are autistic, mostly children).

The NDIA's view of early intervention for autistic children is far too simplistic. The NDIA claims "research and evidence shows children learn and develop best in their natural, everyday settings, hence the importance of family-centred practice ..." so it refuses (or is extremely unwilling) to fund early intervention for an autistic child when the early intervention isn't primarily delivered by parents in a "natural setting". The "research and evidence" that the NDIA refers to is generic; it does not relate to autistic children. This approach is akin refusing to fund a wheelchair for any child, no matter what their need, because children need to run around for their gross motor development.

The NDIA rejects repeated and consistent advice about early intervention for autistic children, advice that good or best practice is a comprehensive program of individualised intensive ASD-specific early intervention for at least 20 hours per week for at least two years.

The NDIA prefers advice it got from Early Childhood Intervention Australia (ECIA) rather than advice from specialists in early intervention for ASD. ECIA has no discernible expertise in early intervention for ASD. ECIA provides generic advice that does not recognise the distinct needs of autistic children. Advice from ECIA must not override specific advice about early intervention for autistic children.

Your approach:

  1. denies autistic children access to good practice early intervention unless their family pays for a trial of intensive early intervention for their child out of their own pocket. This is contrary to the United Nations Convention on the Rights of the Child which says the state is responsible for ensuring a child has access to treatment - with the flow-on of access to effective education for autistic children. The failure/refusal to provide necessary early intervention for autistic children is unfair; it is precisely the type of inequity that the Productivity Commission wanted the NDIS to reduce.
  2. put the risk of an expensive initial trial on the family. This is contrary to the "insurance principles" that Government claims the NDIS is based on.

The advice the Government commissioned and received in 2011 said that ABA (sometimes called Early Intensive Behavioural Intervention - EIBI) is the only early intervention approach for autistic children that is rated as having "established research evidence", the highest rating. The best other early intervention approaches for autistic children are rated (optimistically?) as having "emerging or best practice evidence" (the raters were mostly proponents of second level approaches). An attached report by Paul Terdal from 2013 shows that numerous reviews from overseas (mostly USA) came to similar conclusions (see https://olis.leg.state.or.us/liz/2013R1/Downloads/CommitteeMeetingDocument/13979).

The NDIA relies on a selected bit of the latest local advice about early intervention for ASD. The NDIA says "the report highlights the need to match early childhood programs and services to the child's natural setting". But effective early intervention for ASD has always involved generalising a child's learned skills, that is practicing the skills they learn across a range of natural settings. Generalisation is only part of effective early intervention for ASD. Effective early intervention for ASD requires that skills are learned before they are generalised ... and NDIA planners and delegates (with little or no knowledge of EI for ASD) mostly reject funding requests for early intervention that develops and generalises maximally a child's skills. Skill development is usually best done in a clinical setting then generalisation is done necessarily conducted in natural settings. 

A4 understands that the NDIA, a Government agency, did not receive the advice it hoped for in the 2016 report on good practice for ASD. The NDIA wanted information about how and when to individualise early intervention funding for each child. Some relevant information, at least in relation to ABA, can now be found here.

Research publications indicate that

  1. only ABA achieves "optimal outcomes" for a significant number of autistic children - an "optimal outcome" is when  a child "loses" her/his ASD diagnosis (when a child learned sufficient skills, is as independent as peers and no long needs support for ASD-related characteristics); and
  2. typically ABA results in around 85% of autistic children learning lasting life skills that significantly reduce their support needs and cost of support in later life.

By the way, ABA is not always "intensive" nor is it only for early intervention; ABA is usually relevant in addressing unwanted or challenging behaviour in all age groups.

A4 notes that few if any allied health graduates in Australia are trained to provide good practice early intervention for autistic children. Mostly, allied health graduates are taught a few techniques but they are not taught how to sustain intensive early intervention for 20+ hours per week, how to train and supervise a team of therapy technician to deliver good practice for ASD, or how to achieve "optimal outcomes" for autistic children.  

Government should be concerned that most autistic people are diagnosed too late to access early intervention.

Government should restore the Autism Advisor service, previously part of the Government's Helping Children with Autism package that the NDIA annihilated, so families can make informed choices about early intervention for ASD. Rather than funding "less intensive support" initially, the NDIS should start out fund good practice and monitor each child's progress. If necessary, the NDIS can review each child's progress as early as is appropriate and revise their early intervention plan according to ASD-specific clinical advice.

Apparently A4 is not alone in its disappointment in the NDIS. Since you wrote your letter, the Joint Standing Committee on the National Disability Insurance Scheme published its report on the Provision of services under the NDIS Early Childhood Early Intervention Approach. The Committee is critical of the NDIA's whole approach to assessment of autistic children. The Committee is concerned that the current approach "runs the risk of introducing inequity by benefiting families of children with a diagnosed condition over those without a diagnosis. Moreover, families may attempt to obtain a costly diagnosis to expedite entry to the Scheme". A4 expects that your expectation that families fund and bear all the risk of an expensive trial of intensive early intervention for their child would alarm the Committee.

In relation to NDIS plans involving early intervention for autistic children, the Committee's view in the report says

Underfunded plans for children with autism

4.63 The committee received concerning evidence in relation to recurring funding shortfalls in Plans for children with autism. It appears that the level of funding granted in many Plans does not meet Participants' needs and does not align with recommended evidence-based practice guidelines. This is resulting in those children not accessing the right level of support and therapies to achieve optimal outcomes.

4.64 Alarmingly, the committee heard that NDIS funding levels are often lower than previous national funding models such as Helping Children with Autism. It is concerning that some Participants and their families are potentially worse off than under previous funding models.

4.65 With almost 40 per cent of NDIS Participants age 0–6 years having autism as their primary disability, it is of paramount importance that the NDIA urgently addresses the issues of scope and level of funding in Plans for children with autism.

Recommendation 11
4.66 The committee recommends the NDIA urgently address the issues of scope and level of funding in Plans for children with autism with a view to ensuring that recommended evidence-based supports and therapies are fully funded.

The Committee's report makes numerous other constructive criticisms most of which would improve outcomes for autistic children and deliver long-term financial benefits for the community.

In conclusion:

  • the NDIA's existing policy and practice denies many autistic children access to good practice and evidence-based early intervention.

  • A4 urges you to review the Government's response to the advice it received on good practice for autistic children and reconsider your position on the NDIA's approach to early intervention for autistic children.

--
Bob Buckley
Convenor, Autism Aspergers Advocacy Australia (A4)
website: http://a4.org.au/

A4 is the national grassroots organisation advocating for autistic people, their families, carers and associates. A4 is internet based so that Australians anywhere can participate.

“The first step in solving any problem is recognising there is one.” Jeff Daniels as Will McEvoy in The Newsroom.


The Government's response is available at: Government's response on NDIS and early intervention for autistic children 20/12/2017 
and A4's reply is here: 
disappointing NDIS response on early intervention for autistic children