NDIA, impartial advice and access to best practice early intervention for autistic children

The Hon Jane Prentice MP
Member for Ryan, Queensland
Assistant Minister for Social Services and Disability Services
PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600

email: Jane.Prentice.MP@aph.gov.au

 

Dear The Hon Jane Prentice MP

I write about the promise that “that no one will be worse off under the NDIS” (see here). My particular concerns relate to autistic children and their access to impartial information and effective (best practice) early intervention.

I am writing to you because writing to the NDIA (see here, here, here and here for example) made no discernible difference (on these, or any other significant issue).

Before the NDIS, the Howard government created the Helping Children with Autism (HCWA) package in its final days. Essential features of the HCWA package included that:

  1. as soon as a child was diagnosed with autism spectrum disorder, the family could access impartial advice about treatment, intervention, services and supports from the HCWA Autism Advisor service; and

  2. the family of autistic children up to six years of age could choose to access some government funded early intervention from the HCWA provider panel.

With the NDIS roll-out (from July 2016), the NDIA is abolishing the HCWA Autism Advisor service. The NDIA has no equivalent or comparable service to replace it. Few families with an autistic member are better off doing their own review of research without help or guidance from an HCWA Autism Advisor. So the vast majority of autistic families are worse off with the NDIS in the period following an initial autism diagnosis.

The NDIA is breaking the Government’s promise that ‘no one will be worse off under the NDIS’.

A profusion of research reviews (for example, here, here and here) conclude that the early intervention approach called either Applied Behaviour Analysis (ABA) or Early Intensive Behaviour Intervention (EIBI) has the best evidence of efficacy for autistic children. Not all families choose ABA/EIBI, however as the approach with the strongest evidence, ABA/EIBI should be an available option for families who expect or have found it to be effective for their autistic child: ABA/EIBI from a BCBA should be an option on the list of available options.

And it was with HCWA.

I expect that the NDIA will make a number of other intensive comprehensive ASD-specific and individualised early intervention approaches available for autistic children … subject to agreement with the broad ASD community in Australia.

Behaviour analysts, in order to be recognised, should register as a Board Certified Behaviour Analyst (BCBA) with the international Behavior Analysis Certification Board (BACB – website http://bacb.com/).

The Department’s Early Intervention Service Provider Panel Operational Guidelines (Feb 2015) lists Board Certified Behaviour Analysts (BCBA) under 2.2 Eligible Providers – Providers eligible to become a ‘fully qualified’ panel member.

The NDIA, on the other hand, does not include BCBAs on its provider panel.

Consequently, autistic children whose families want/need an ABA/EIBI early intervention program, that is supervised by a BCBA, cannot access NDIS funding for their preferred evidence-based early intervention. The NDIS should aim to deliver as many “optimal outcomes” as possible (see here, here or here) as this will minimise the long-term cost of the NDIS.

These children are worse off under the NDIS. And that also breaks the Government’s ‘no one will be worse off under the NDIS’ promise.

The NDIS Quarterly Reports show that “autism and related disorders” are the most common distinct disability type for NDIS participants. A substantial number of families and their autistic children are worse off.

The NDIA website says:

… Our role is to implement the National Disability Insurance Scheme (NDIS), which will support a better life for hundreds of thousands of Australians with a significant and permanent disability and their families and carers. The NDIS will mean peace of mind for every Australian - for anyone who has, or might acquire, a disability.

Our priority is to ensure people with disability continue to get the support they need. The changes that are required to existing disability support systems are significant. Arrangements are being made to ensure the scheme can be introduced gradually, ensuring a smooth transition for people with disability and support providers.

Surely, the role of the NDIA is to ensure people with disability continue to get the services and support they need; the role is not restricted to support. Effective early intervention is essential for autistic children.

I accept that significant changes are needed to meet the needs or people with disability. I believe the NDIS has substantial potential for improving the lives of people with disability. However, some of the changes that the NDIA is making are not the best for autistic people. And some changes that the NDIA made result in autistic children and their families being worse off … which is a broken promise.

Autism Aspergers Advocacy Australia calls on federal, state and territory Governments to require that the NDIA ensures:

  1. access to impartial advice about autism services, treatment/interventions and supports is restored for families of autistic children; and

  2. that the NDIA change its early intervention approach so that it funds best practice early intervention (as recognised by the ASD community) 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.


Subject: RE: NDIA, impartial advice and access to best practice early intervention for autistic children
Date: Tue, 8 Nov 2016 23:09:36 +0000
From: Prentice, Jane (MP) <Jane.Prentice.MP@aph.gov.au>
To: 'Bob Buckley (A4 Convenor)' <convenor@a4.org.au>

 

Thank you for taking the time to contact my office, please accept this as confirmation that your email has been received.

Due to the large number of emails received each day, it is not possible to reply immediately. 

However your email has been forwarded to the Department to provide a response as soon as possible. 

Response times will vary depending on the complexity of the issues raised.

Yours sincerely

OFFICE OF THE HON. JANE PRENTICE MP | Federal Member for Ryan | Assistant Minister for Social Services and Disability Services

Suite R1-93, Parliament House, Canberra, ACT, 2600. Telephone: (02) 6277 4426
http://janeprentice.dss.gov.au/