ACT Health - neglecting supports for autistic Canberrans

SOfASD used the ACT Freedom of Information process to request all information about ACT Health reviewing its support and services for autistic Canberrans (see FoI request: ACT Health supports for autistic people). The ACT Government's response is in 6 files (links below).

Before you download all this information (links below, they are quite big files), be warned that very little of it is about services for autistic people. Most of the material is specifically about people with Intellectual Disability (ID). Also, the FoI document is poorly prepared: the page numbers in the document list near the front are incorrect and some document titles are listed incorrectly.

It seems that the people who compiled the FoI response, and the people who were involved in responding to the ACT Mental Health Minister, know very little about autism spectrum disorder (ASD). They seem to assume (quite wrongly) that autism/ASD is just part of Intellectual Disability. They decided that they should exclude autistic people and their representatives from all discussion.

ASD or autism is distinct from Intellectual Disability ... though the disorders may be comorbid for some people (usually said to be 30-50%). The DSM-IV and DSM-5 are quite clear that ASD is usually the primary disability.

  • In the DSM-IV, Autistic and Aspergers Disorders were grouped in Pervasive Developmental Disorders on Axis I. They were quite distinct from "Mental Retardation", better called Intellectual Disability, that was listed on Axis II, a quite separate part of the manual.
  • The DSM-5 requires that clinicians specify "with or without" Intellectual Disability in an ASD diagnosis.

ACT Health created its Mental Health Services for People with Intellectual Disability Working Group. From the outset, autism/ASD was omitted from the Working Group's title. This is classic Yes Minister strategy; getting rid of any difficult bits from the title.

Apparently, this was an ACT Government secret Working Group as we have not found any public statements or information about it.

The Working Group's draft Terms of Reference (ToR) (see FoI pages 85-87) claims it was "committed to developing an action plan for improving the provision of mental health services for people with intellectual disability and Autism Spectrum Disorder in the ACT". The opening notes refer the Working Group to "the National Roundtable on the Mental Health of People with Intellectual Disability (2018)" — see link below — which is a document that omits/neglects autistic people. 

The ToR says the group's role/purpose is to "discuss and develop a strategy for mental health services for people with Intellectual Disability, inclusive of Autism Spectrum Disorders where appropriate, in the ACT". The Working Group was set up to neglect autistic people except when services developed for people with Intellectual Disability are also "appropriate" for autistic people. The Working Group's "Reporting Mechanism" clearly and deliberately omits/neglects any specific needs of autistic people.

The Working Group's membership has no one representing autistic people. There is no record of the Working Group communicating with the ASD community in the ACT. The Working Group disregards the principle of "nothing about us without us", of community consultation or stakeholder engagement.

The Minutes of the first meeting 15/11/2018 (FoI pages 81-84) show that members of the Working Group believe "The majority of people identified with autism spectrum disorder also have an intellectual disability (about 70%), group advised it would be appropriate to address these groups within this strategy". The ASD community feels that ID is comorbid with ASD in 30-50% of autistic people ... and that autistic needs must also be specifically and distinctly addressed, ASD is not just a part of someone's ID. The Working Group's ignorance of this is disappointing ... but expected.

Not surprisingly, given its ToR and membership, the Working Group does not make any recommendations in relation to services for the substantial number of autistic citizens who need health and mental health supports. There is no discernible policy or action plan. Note the action plan mentioned/proposed at FoI pages 159-60, even if it is just meant for people with ID, is blank.

There is an ACT Health document, Mental Health Services for People with Developmental Disability, (see FoI pages 124-155 - not available on the internet) that essentially avoids ASD-related issues, especially issues relating to distressed behaviour (usually called challenging, problem or unwanted behaviour, behaviours of concern, etc.). Basically, it shows that:

  • there are very few services for autistic people in the ACT, and
  • no discernible plan to improve the situation.

Other documents provided by or referred to in the FoI are available online. For example:

  • Sullivan, Heng, (2018)  Approaches to primary care of adults with intellectual and developmental disabilities: Importance of frameworks for guidelines is available here. It does not mention "autism" or "autistic" at all.
  • the WISH report is here.
  • Reed, G. M., First, M. B., Kogan, C. S., Hyman, S. E., Gureje, O., Gaebel, W., … Saxena, S. (2019). Innovations and changes in the ICD-11 classification of mental, behavioural and neurodevelopmental disorders. World psychiatry : official journal of the World Psychiatric Association (WPA), 18(1), 3–19. doi:10.1002/wps.20611 - FoI pages 93-109.
  • Zhou, Du (2019) Adverse drug event-related hospitalisation in persons with neurodevelopmental disorders: a state-wide retrospective cohort study. 63(5):429-440. doi: 10.1111/jir.12586.  - FoI pages 110-21.

In June 2019, Ms O'Dea wrote (FoI, pages 165-6) to various ACT politicians about health issues for autistic Canberrans. The brief prepared for the ACT Mental Health Minister 8/8/2019 (FoI pages 162-4) neglects to mention (remind the Minister of) the Working Group.

It appears that the Canberra Hospital's Emergency Department developed an Action Plan - see link below (also FoI page 171). This "plan" claims that the "stakeholders" were identified before 20/9/2019 ... yet the ASD community in the ACT is unaware of this activity. Apparently, this plan  sprung up spontaneously, with no documented motivation or development process.

This planning may have stalled: items due for completion by 18/10/2019 and 15/1/2020 are not marked as completed.

The conclusion is simple: ACT Health ignores ASD advocacy and stakeholders.

see also: