AADDM advocates for change at the National Roundtable on the Health of People with Intellectual Disability

AADDM has been involved at advocating for changes to our health and related systems to improve health of people with intellectual disabilities. A national Roundtable was held on 2 August 2019 and hosted by Minister Greg Hunt, which resulted in funding enhancement for primary health care and an agreement to establish a future roadmap.

For more details, please see the link below.
National roadmap for improving the health of Australians with intellectual disability

Associate Professor Helen Leonard is the Winner of the 2019 Bob Davis Award

AADDM congratulates Associate Professor Helen Leonard, Telethon Kids Institute, on being this year’s successful nominee for the 2019 Bob Davis Award.

Her research work built on 20 years of clinical practice which primarily involved the management of children and adults with intellectual disability, has resulted in a remarkable 286 publications. She has also been awarded two highly sort after NHMRC Senior Research Fellowship.

Helen has established a population-based intellectual disability database in Western Australia, is a member of an innovative autism registry collaboration, and she set up the internationally unique population-based Australian Rett Syndrome Database.

Helen has exhibited drive, energy, tenacity and an enormous capacity for hard work. AADDM is very proud of her ongoing contributions to improving health of people with ID and continues in her role as AADDM committee member.

For more information on the Bob Davis Award, please click here.

Mr Jim Simpson receives the Bob Davis Award for 2018

Mr Jim Simpson was the 2018 recipient of the Bob Davis Award. As Legal Advocate, NSW Council for Intellectual Disability and member, AADDM, he has made a tremendous impact on the health and wellbeing of people with intellectual disability, not just in NSW, but Australia wide. Some of his achievements include: led numerous submissions to ensure that people with an ID are involved in policy, the 2013 National Roundtable on the mental health of people with an ID, contributed to the inclusion in 2006 of items in Medicare for annual health assessments of people with ID, major contribution to 2012 NSW Health, Ageing, Disability and Home Care, Health Service Framework to improve the health care of people with an ID in 2012 and in 2018, funding boost of $4.7m for specialised ID health teams and contributed to enhanced disability support in NSW for offenders with an intellectual disability, including the 400 client Community Justice Program. Much of his advocacy has been in partnership with AADDM and our members.

For more information on the Bob Davis Award, please click here.

Dying for change – Lightning talks for action on improving the health and life expectancy of Australian people with intellectual disability

Join us as we hear from international and local experts, including people with intellectual disability, advocates, researchers and medical practitioners as we ask the big questions. What is at the root of this issue? What needs to be done? And whose responsibility is it?

Venue: UNSW CBD campus
Date: Monday 5th November
Time: 4-6pm

Please click here to register.

New Research on Juvenile Detention in Western Australia

In a study published this week in the BMJ Open comprehensive, multidisciplinary assessments, using Australian diagnostic criteria for fetal alcohol spectrum disorder (FASD) were undertaken on a representative group of 99 young people incarcerated in Western Australia’s only youth detention facility.

Over a third (36%) of those assessed were found to have a diagnosis of FASD but only two had been previously diagnosed. As one of the researchers from the Telethon Kids Institute explained:

“These young people’s previous contacts with government agencies represented missed opportunities for earlier diagnosis and intervention, which could have prevented or mitigated their involvement with justice services – and more importantly may have permitted alternative community care with targeted health and educational interventions and rehabilitation.”

Release of the 5th National Mental Health and Suicide Prevention Plan

The 5th National Mental Health and Suicide Prevention Plan was recently released. It includes welcome and specific acknowledgement of the mental health inequalities faced by people with intellectual disability. It also includes a statement that implementation of the eight priority areas in the plan “requires specific and appropriate application” to people with intellectual disability and other groups with specific diverse needs. Thanks to Jim Simpson, Senior Advocate, NSW CID, for advocating for this outcome and sharing the news.

Below are key extracts from the plan. You can see the full plan here.


People with disability, particularly people with intellectual disability, experience higher rates of mental health problems and mental illness. It is estimated that people with intellectual disability are at least two to three times more likely to have a mental illness than the general population, yet people with intellectual disability experience significantly lower rates of treatment of mental health problems compared with the general population and many encounter significant barriers which prevent timely access to appropriate supports and services. People with intellectual disability also tend to be more vulnerable to the factors that can lead to the development of mental health problems. Mental illness in people with intellectual disability can also be overlooked for a range of reasons, including that the person may be unable to describe their experience and that their behaviours may be misattributed to their intellectual disability. People with intellectual disability and mental illness often have complex needs that require a coordinated approach across multiple service sectors. Integrated, accessible and person-centred supports and services are key to ensuring that people with disability, particularly people with intellectual disability, can experience better mental health and realise their potential.


The Fifth Plan sets out to achieve outcomes in eight priority areas that align with specific aims and policy directions in the National Mental Health Policy. These priority areas do not reflect all the aims and policy directions in the National Mental Health Policy but align with those that are well positioned for change in terms of both need and opportunity. The eight priority areas of the Fifth Plan are:


  1. achieving integrated regional planning and service delivery
  2. effective suicide prevention
  3. coordinating treatment and supports for people with severe and complex mental illness
  4. improving Aboriginal and Torres Strait Islander mental health and suicide prevention
  5. improving the physical health of people living with mental illness and reducing early mortality
  6. reducing stigma and discrimination
  7. making safety and quality central to mental health service delivery
  8. ensuring that the enablers of effective system performance and system improvement are in place.

Provision of Services under the National Disability Insurance Scheme Early Childhood Early Intervention Approach

Jacki SmallOn 3 October 2017, AADDM President, Jacqueline Small, appeared before the Joint Standing Committee on NDIS- ECEI approach. AADDM had made a submission that identified a range of concerns about service provision under ECEI (see aaddm.com.au/submissions). A full transcript is now available here.

Key messages included:


  • There are weaknesses with the key-worker model/ECEI approach. We believe that the almost exclusive emphasis of the ECEI approach that has been implemented on supporting parents is leading to a reduction in much-needed educational and therapy services;
  • Challenging behaviour seems not to be well understood or supported, despite it being an important predictor for longer term, poorer outcomes for the child, family and service providers.
  • Substantial delays have been experienced in finding approval and access to services due to a range of issues with design and the early transition period.
  • Referral to the NDIS ECEI should build on paediatricians’ and other health professionals’ expertise.
  • A life-span perspective is important for the child and the family. This involves anticipatory guidance and intervention for those conditions associated with poor long-term outcomes, such as challenging behaviours and limited communication, and enhancement of resilience factors such as connection to community, support for siblings and education of families.
  • There are significant gaps emerging, some of the early intervention services are no longer providing the services they were previously providing. Importantly, in New South Wales, all of the disability budget was rolled over to the NDIS, but that budget funded a range of services for which there will no longer be funding under the NDIS. So there will be significant loss of services.