letter: NDIA, autism stakeholders and early intervention

NDIS logo

Mr Robert De Luca
CEO of the National Disability Insurance Agency

Dear Mr De Luca

Autism Aspergers Advocacy Australia, known as A4, is the national grass-roots advocacy group representing autistic people and others living with autism spectrum disorder (ASD). A4 and others in the ASD community have tried to engage with the National Disability Insurance Scheme (NDIS) from the outset. But there has been very little progress.

At this stage, over 25% of NDIS participants have autism/ASD as their primary disability. The number of autistic NDIS participants is substantially more than the NDIS predicted. The Productivity Commission reports that the rate of ASD is substantially higher in the 0-14 year age group.

Clearly, autistic people are a major group among NDIS participants. The number of ASD diagnoses continues to grow substantially (see http://a4.org.au/node/1452). For the NDIS to be effective, it needs to get services and support right for autistic NDIS participants.

A4 and others in the ASD community offer valuable information that is essential to the creation of effective NDIS services and supports for autistic people in Australia. For example, A4 and others warned the NDIS and state/territory governments that their initial planning underestimated the number of autistic children who needed support from the NDIS. The NDIS chose to ignore input from the autism community.

It turns out that the ASD community was right about the number of autistic NDIS participants.

As yet, we have been unable to get the NDIA to report publicly on the proportion or number of autistic children in the early intervention part of the NDIS.

A4 is very disappointed that the NDIA has minimal engagement with ASD related stakeholders.

  1. The NDIA created what it called an ASD “stakeholder group”1 for its revised “good practice for early intervention for ASD” report. The group was more an academic, clinician and service provider than a group of stakeholders. The group was not saying what the bureaucrats wanted to hear so the NDIA disbanded the group before/without showing it the NDIA’s Early Childhood Early Intervention (ECEI) Approach –- the NDIA avoided input on its ECEI Approach from any ASD stakeholders despite children with ASD being the major part of the NDIS early intervention participants;

  2. The NDIA met with A4 on 21/12/2016. At the meeting/video-conference the NDIA said it was working with AEIOU in Townsville to trial a different approach for early intervention for ASD. However, AEIOU told A4 it had no idea what the NDIA was talking about. The NDIA downgraded its claim saying instead that “AEIOU have worked collaboratively with the NDIA and Early Childhood Partner to assist the transition of children and families into the Scheme” and that the NDIA would show A4 the outcome at “a meeting at a suitable time and date in the week beginning 19th June 2017” (see http://a4.org.au/node/1438). The NDIA never organised the promised follow up meeting; it ignored a subsequent query about the follow up (see http://a4.org.au/node/1576).

  3. Following numerous letters to politicians2 that clearly spell out a cornucopia of concerns about the NDIA’s ECEI Approach in relation to autistic children, an NDIA official (Ms Faulkner) asked for “a face-to-face meeting with [her] to discuss your concerns”. When I arrived and before our meeting started, Ms Faulkner said she was not prepared to discuss anything and asked that A4 use the meeting to again raise/describe its concerns. I did the best I could without notice. After the meeting, Ms Faulkner said she would write back “in a couple of days” and summarise what the NDIA understood from the letters and from my impromptu presentation of the issues and concerns.

  4. After two weeks, I wrote to Ms Faulkner. Ms Faulkner sent two emails in response (see http://a4.org.au/node/1654). Ms Faulkner’s response omits all of A4’s concerns. Ms Faulkner’s formal response and summary of the meeting (EC18-000445) mentions only that “Autism Advisor Services and Better Start Registration and Information Service (RIS) continue to operate in some states and jurisdictions until transition to the NDIS is complete”. A4’s actual concern (among many others) relating to this specific item is that the NDIA is abolishing (in some places, it has already abolished) Autism Advisors and the essential service they provided previously. Ms Faulkner’s “summary” shows that the NDIA does not recognise any of the numerous concerns that A4 raised. The NDIA’s only “engagement” with ASD stakeholders is occasional meeting to not discuss concerns relating to services and supports for autistic Australians. Ms Faulkner mentions a “review [that] will also consider and address issues raised by the Joint Standing Committee on the ECEI approach”. This “review” is discussed below.

  5. The NDIA does not recognise the numerous concerns of ASD-related stakeholders relating to the NDIS and early intervention for autistic Australians.

We urge you to consider the plethora of issues relating to early intervention for autistic children that A4 raised in letters to Ministers and copied to the NDIA. Please note that Ms Faulkner’s summary of the issues discussed in our meeting omits all of the concerns that A4 raised in those letters; many of which A4 also described in this latest meeting. Instead, it briefly acknowledges that what the NDIA officials said in the meeting about anything, their few words about the previous Autism Advisor services, was incorrect.

A4 is not alone in its concerns. The Joint Parliamentary Committee on the NDIS published its report that raisesconcerns about the NDIA’s early intervention approach (7/12/2017). The Committee recommends that the NDIS improve its ECEI Approach for autistic children. So far, there is no discernible response from the NDIA, the Minister or the Government to, and no visible recognition of, the Committee's concerns and recommendations.

Ms Faulkner says “As you may be aware, the NDIA is currently undertaking a review to consider and identify enhancements to the ECEI tailored pathway”. A4 is aware (of its ECIA Best Practice Review), but only because our contacts in the disability sector alerted us to this “review”. It seems that the NDIA chose Early Childhood Intervention Australia (ECIA), the authors of the existing ECEI Approach that is quite problematic for autistic children, to conduct this review. Through this choice, the NDIA created a major conflict of interest. The concerns and recommendations of the Joint NDIS Committee were not mentioned/presented or discussed in the “consultation” (the brief ECIA Best Practice Project ACT Round Table – 22/2/2018) that A4 attended. While the significance of ASD in the early intervention “space” was acknowledged, there was little or no awareness of the distinct nature of ASD and the need for ASD-specific strategies, services and approaches. The clear intent was to justify generic early intervention and avoid issues arising from the diversity and complexity of the disability sector especially in relation to autistic children. The review process limited/minimised input from the ASD community.

Ms Faulkner has proposed another meeting between A4 and the NDIA in July 2018. It is not clear whether she wants to further not discuss and not recognise concerns about early intervention, or whether she would prefer to not discuss and not recognise other areas of concern about the NDIS relating to autistic people.

A4 is very keen to do what it can to help the NDIS improve outcomes for autistic people. A4 wants the NDIS to be the best it can be. A4 will continue to meet with the NDIA since it appears the NDIA regards these meetings with A4 as useful somehow.

The consequence of the NDIA’s inability/refusal to engage properly with ASD stakeholders over early intervention for autistic children is inappropriate, ineffective, disrespectful and extremely disappointing. The NDIA’s approach will bring poor long term outcomes, detriment to autistic people and substantial cost to the community generally. This is not how a proper “insurance model” operates.

A4 wants to see outcomes for autistic Australians improve substantially. Clearly, the approach the NDIA is taking to autistic NDIS participants will not achieve that outcome. The first step is for Government and its agencies to recognise the unacceptable outcomes autistic Australians currently experience. Please can we meet to discuss current outcomes and prospects for improving outcomes for autistic Australians?

I can be reached via email or telephone: 0418 xxx xxx.

1See Textbox 2 on page 5 and Appendix 1 of the report, see http://goo.gl/qQtpo3.

2See http://a4.org.au/node/1580 (4/12/2017), http://a4.org.au/node/1582 (11/12/2017) and http://a4.org.au/node/1437 (3/2/2017).

--
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.


A4 also sent this letter to:
  • The Chair of the NDIA Board
  • The Commonwealth Minister and assistant ministers
  • the Joint Standing Committee on the NDIA
  • the members of the COAG Disability Reform Council

Dear Mr Buckley,

Thank you for your email. The National Disability Insurance Agency (NDIA) welcomes feedback and complaints as it helps us improve our processes and service.

Your complaint has been referred to the National Complaints Team (NCT) for action and response. The NDIA will endeavour to address your concerns within 10-15 business days.

An agency staff member will be in contact with you to discuss your concerns and will work with you to resolve your issue as soon as practicable.

For more information about the NDIA’s commitment to feedback, please visit our website or email feedback@ndis.gov.au

Thank you again for raising your concerns.

Kind Regards,
Lisa
National Complaints Team
Participant Services
Operations

National Disability Insurance Agency


Dear Mr Buckley:

Thank you for your email regarding your concerns about engagement with the NDIA and the Early Childhood Early Intervention (ECEI) approach. I appreciate you taking the time to bring this to my attention and have also copied Mr Rob De Luca, CEO of the National Disability Insurance Agency (NDIA) on my response.

I understand that you met with Chris Faulkner, General Manager Operations, Christine McClelland, Director ECEI and Lou O’Neill, Branch Manager Scheme Policy in January 2018 to discuss your concerns and that another meeting will be shortly scheduled for mid-year. I have asked Ms Faulkner to schedule this meeting earlier to discuss the issues raised in your email.

As you are aware, the NDIA has undertaken an end to end review of the participant pathway following feedback that experiences were not meeting the high standards to which the NDIA aspires. This includes the ECEI pathway. As a result the NDIA is trialling a new NDIS Pathway. We feel confident that the Pathway will significantly improve the experience participants and organisations will have with the NDIS. The Pathway includes measures to improve access and communication, as well as a broad approach to ensuring the right supports and outcomes are available to participants.

Once again, thank you for raising your concerns with me. I very much appreciate it.

Your sincerely

Helen

Dr Helen Nugent AO
Chairman

27/3/2018


The NDIA's response is at http://a4.org.au/node/1690. Basically, the NDIA CEO declined to meet. Instead, they have proposed an earlier meeting than the 6 month interval that they previously planned.