Questions about autism and the NDIS

Date: Thu, 31 Jan 2019 11:28:12 +1100
To: Dr Helen Nugent OA <chair@ndis.gov.au>, De Luca, Roberts <Roberts.DeLuca@ndis.gov.au>
CC: RUNDLE, Vicki <Vicki.RUNDLE@ndis.gov.au>

Dr Helen Nugent, Chairman
Mr Robert De Luca, Chief Executive Officer
National Disability Insurance Agency 
GPO Box 700
Canberra ACT 2601

cc: Ms V Rundle

Dear Dr Helen Nugent and Mr De Luca

Subject: Questions about autism and the NDIS

The Australian published an article Autism support scaled back as NDIS tries to rein in blowout (24/1/2019). We note the NDIS Y6Q1 Quarterly Report, that this was apparently based on, was released in mid-November (a few weeks behind schedule); there was no new release of information as was suggested by the reporter.

Figure e.5 in the Y6Q1 report, and the related graph in the article, shows that NDIS support for autistic participants is well below expected funding level, so it does seem that the NDIS has “scaled back” its support for autistic participants.

We note that there is no “blowout” in the NDIS. The report says (page 5)

The Scheme remains within budget

The Scheme has been within budget each year of its operation and remains within budget this year to date. It is also projected to remain within budget for the whole of 2018-19.

We expect the NDIS will remain within budget while

  1. the number of NDIS participants at this stage of the roll-out (197,426 at end Y6Q1) is well behind any schedule that would reach most of the planned 460,000 participants by July 2019.
  2. funding committed to autistic NDIS participants, the largest primary disability type in the NDIS, remains well below expected levels.

Autism Aspergers Advocacy Australia (A4) has a number of questions especially about Figure E.5 from the Y6Q1 report.

Figure E.5 separates the cost of committed supports only by primary disability. A4 expects that the age profile of autistic participants is quite different from other disability types. Our understanding of the NDIS’s supports would improve considerably if the NDIS subdivided these data showing separate figures for ECEI participant, school-age (or non-ECEI up to 20 years), and post-school participants for at least autism and intellectual disability. And it would help even more if the NDIS autism figures were further separated based on “with/without intellectual disability” status.

Question 1. Please provide the number of and the cost of committed supports for autistic NDIS participants and NDIS participants whose primary disability is intellectual disability subdivided for ECEI participant, school-age (or non-ECEI up to 20 years), and post-school participants for at least autism and intellectual disability?

Question 2. Figure E.5 shows a small variation between “expected average annualised committed supports” for Y5Q4 and Y6Q1. Please explain what these figures a) mean, b) how they are derived and c) why they vary? Please provide d) the dollar vales for these figures?

A significant proportion of autistic people also have intellectual disability. The DSM-IV and the DSM-5 advise that autism is usually the primary disability.

Question 3. When autism is usually regarded as the primary disability, why does the NDIS have a substantially higher “expected average annualised committed supports” for participants with intellectual disability compared to autistics?

Figure E-5 shows “the actual average annualised committed supports” for autism is well below expectation, while the actual supports for NDIS participants with intellectual disability (and most other disability types) are well above expectation.

Question 4. Why are planning outcomes so different between autism and intellectual disability?

Simple averages don’t always “explain” what is happening.

Question 5. Will the NDIS show us more information about the variation in actual plan costs for autistic NDIS participants?

As we indicated above, a significant proportion of autistic people also have intellectual disability. We expect these people have at least similar needs to people whose primary disability is intellectual disability.

Question 6. Are NDIS plans for autistic NDIS participants also with intellectual disability funded at or above the rate for NDIS participants with intellectual disability as their primary disability? If not, why not and what is the difference?

The Government has been advised repeatedly that good or best practice early intervention requires 20+ hours of intensive individualized ASD-specific early intervention for at least two years.

Question 7. How much does an NDIS plan to provide best practice early intervention for an autistic child cost?

Question 8. How many autistic children currently have an NDIS plan that funds best practice early intervention?

Question 9. How many (or what proportion) of those children have their plan following their request to the AAT that the NDIS planning decision be reviewed?

Many autistic people need support for their distressed behaviour (often called challenging behaviour or behaviour of concern). The NDIS has a list of service providers. Some o them list “behaviour support” as a service.

Question 10. What is the basis for a provider listing “behaviour support” in its “registration groups”?

The ASD community is very concerned about the prospect for poor practice in this area.

Question 11. What quality and safety requirements does the NDIS maintain in relation to providers in the “behaviour support” group? What measures of compliance are recorded?

The NDIS has a section on Early Intervention for children with “a developmental delay”.

Question 12. Does the NDIS consider autism or autism spectrum disorder to be “a developmental delay”?

Question 13. What is the NDIS’s Early Intervention approach for autistic participants other than those accessing the NDIS ECEI Approach?

The NDIS expects that some autistic children will become ineligible for the NDIS as a result of its ECEI Approach or its Early Intervention approach.

Question 14. How many autistic children, on an annual or quarterly basis, become ineligible for the NDIS as a result of early intervention either through a) losing their ASD diagnosis, or b) remaining autistic but reducing their disability enough to become ineligible for the NDIS?

A4 has a Policy on Unanswered questions, see http://a4.org.au/node/1419. Please contact us if you need clarification for any of our questions above.

Question 15. If you can’t answer these questions by February 21, please indicate when you will provide answers?

 

Yours sincerely

 

31/1/2019

 

--
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.