Past research

Urban Jungles: Making cities healthy places for Australians with neurodiversity

The current design of public space limits access by people with neurodiversity (intellectual disability, autism, mental illness, acquired brain injury, and ageing associated). Navigation can be enhanced through development of design principles for public spaces for people with neurodiversity or sensory differences in touch, taste, sound, sight, smell and proprioception, and in vestibular realms. Globally, there is no current comprehensive and concentrated research into the relationship between neurodiversity and the built environment.

Miriam Taylor and Cindy Nicollet from QCIDD in collaboration with A/Prof Kathi Holt-Damant from QUT in 2012 undertook a sensory mapping pilot in Logan with a small project fund from Logan City Council. The project utilised a mixed-method approach that included an international sensory profile, an urban experience survey and observational recordings during an urban walk in Logan Central (south of Brisbane, Australia). Four neurodiverse and four neurotypical participants undertook all three aspects of the research. The combined results for both the neurodiverse and the neurotypical group were mapped across the seven senses mentioned above. The most common barriers experienced by both groups were loud noises, bright colours, flashing lights, heavy traffic, and crowded spaces. Whilst these are features are typical to many urban spaces, and also experienced by people who are neurotypical, the experience for people with neurodiversity is amplified by their sensitivity. Many people with neurodiversity are said to experience significant movement disturbances which impede communication, spatial sense, proprioception and movement through space. If a person’s ability to sense their body in space is compromised by the features of the urban space, could this stress amplify the sensory challenges experienced? The researchers posit that if we can enhance ease of movement through urban spaces, then we achieve more inclusive design. If movement is the key factor to sensory responses, then spaces can be manipulated to reduce sensory demands.

New collaborations are emerging with Logan Regional Development interested architects and app designers. We have developed project plans for an app to be piloted, a website to be called "NeurodiverCity", and comprehensive research which includes autonomic measures.

Passports to advantage: Health and capacity building as a basis for social integration

The aim of the Passports project was to evaluate the impact of a health and psychosocial intervention package for adult prisoners being released to the community in Queensland, on:

Post-release physical and mental health, and health risk behaviours, within the first six months of release;
Access to and use of health services, during the first two years post-release;
The incidence and timing of recidivism within two years of release.

Baseline data was collected 1,328 participants recruited into the cohort from seven Queensland prisons. The project involved three follow-up interviews approximately one, three and six months post-release. Medicare conducted the record linkage for nearly 1200 prisoners from the Passports cohort. The Australian Institute of Health and Welfare Have provided mortality data using the National Death Index (NDI) and the National Mortality Database (NMD).

The HIP-Aus Study (Health outcomes after release from prison in Australia)

In 2010 CIs Kinner and Lennox, along with other investigators, were awarded a large NHMRC project grant to build on the Passports project through prospective record linkage and abstraction of prison health records, and to establish a similar cohort (N=1,000) in Western Australia. This project is establishing the largest and most comprehensive cohort of ex-prisoners ever studied, internationally.

This study is focussing on health outcomes and health service utilisation among adult ex-prisoners in two states that incarcerate 44% of Australia’s Indigenous prisoners.

The study aims to:

Compare the health-related experiences of Indigenous and non-Indigenous ex-prisoners in two Australian states, during the first two years post-release;

Identify barriers to, and facilitators of, access to appropriate community-based health care for Indigenous and non-Indigenous ex-prisoners;
Explore the health consequences of prisoners’ exclusion from Medicare and the Pharmaceutical Benefits Scheme (PBS), both in custody and post-release;
Identify pathways linking health care utilisation, physical and psychiatric morbidity, mortality and recidivism among Indigenous and non-Indigenous ex-prisoners;
Explore the impact of mental illness on physical health, health service utilisation and offending outcomes among Indigenous and non-Indigenous ex-prisoners.

Linked data has been obtained from:

Queensland Trauma Registry (QTR)
Queensland Ambulance Service (QAS)
Queensland Hospital Admissions Patient Data Collection (QHAPDC)
Consumer Integrated Mental Health Application (CIMHA)
Emergency Department Information System (EDIS)
Alcohol, Tobacco and Other Drug Services (ATODS)
Notifiable Conditions System (NOCS)

from five years before until five years after the episode of imprisonment during which the participant was enrolled in the ‘Passports to Advantage’ study.

Data has been extracted from the QLD Health prison medical records of 1063 prisoners. Data analysis of the rich Passport dataset is continuing and including the linked data from the HipAus follow-up study. The results have been the subject of many papers and presentations, a number being specifically on prisoners with intellectual disability.

Improving transitional experiences for ex-prisoners with intellectual disability

Approximately 1 in every 10 soon-to-be-released prisoners in Australia lives with an intellectual disability, yet remarkably little is known about their health and justice-related outcomes following their release from prison.

This study aimed to understand the transition out of prison for people with intellectual disability across two Australian states: Queensland and Western Australia. We interviewed 17 service providers to seek their perspectives about where gaps in the transition out of prison exist and which specific steps can be taken to address unmet need.

Our analysis of key themes identified inadequate life skills, identification of disability, system complexities and combative relationships as crucial gaps to providing comprehensive and effective support during the transition out of prison. Key facilitators to overcoming these gaps included early planning, continuity of care, relationships and trust, training and the NDIS.

This arena is complex and our results indicate that there are clear differences between policy, service delivery objectives, and actual delivery of services to target recipients.

The ASK project

Adolescents with intellectual disability have been shown to have high levels of unrecognised disease and inadequate health screening/promotion than the general population. We aimed to improve the healthcare of these adolescents. We undertook a parallel-group cluster randomised controlled trial of a combined health and educational intervention

The Ask Project was taught in special schools and special education units in mainstream schools in South-East Queensland. It was based on the “Ask Health Diary”, a copy of which was provided to families who were also asked to take their young person for a comprehensive health review using the CHAP tool. While some teachers thought the diary was too difficult for those students with more severe disabilities, our findings indicate that the Ask Health Diary provides a sound curriculum framework for teachers, adolescents and parents/carers to work together to promote self-determination and better health outcomes for young people who have an intellectual disability.

Compared to the usual care group carers reported the adolescents from the intervention group were significantly more likely to go to the doctor on their own, ask questions and explain their health problems to the doctor without help. Analysis of the GP data for these adolescents, collected from the 286 practices involved in this study, found that adolescents allocated to receive the health intervention were more likely to receive sensory testing, to have their blood pressure checked and weight recorded. The findings suggest improved healthcare autonomy from this educational initiative based on Ask Health Diary and enhanced health care delivery consistent with finding from RCTs in adults with intellectual disability using the CHAP.

The size and uniqueness of this dataset means that analysing specific variables may result in many interesting and yet unpublished findings on adolescents with intellectual disability. To date we have explored medication use, obesity, injuries, parenting stress and the psychopathology of hospitalized adolescents.

Longitudinal Follow-up of the CHAP

The Comprehensive Health Assessment Program (CHAP) has been shown to be effective in improving health outcomes for people with intellectual disability, especially in neglected health areas such as immunisation, vision and hearing checks.

For more than ten years, participants of the original CHAP randomised trial have received an annual or biennial health assessment.

Based on the work undertaken in the original project we have expanded this project in length and scope. We aim to recruit these initial participants at Endeavour Foundation for a longitudinal follow-up study, and this involves:

Access to Endeavour Foundation CHAP records. For current residents at Endeavour Foundation, we will collect information from all of their CHAP booklets from the original trial to present date. For those who have died or moved away, we will request information from CHAP booklets relating to the period when individuals were residing at Endeavour Foundation.
Data linkage. We will seek access to participants’ health information from state government databases, consisting of:
- Queensland Hospital Admitted Patient Collection (QHAPDC)
- Consumer Integrated Mental Health Application (CIMHA)
- Emergency Department Information System (EDIS)
- Notifiable Conditions System (NOCS)
- Vaccination Information and Vaccination Administration System (VIVAS).

By extracting health information from CHAP booklets and databases we will be able to quantify the incidence of disease and health-related conditions experienced by this vulnerable population and also determine the pattern of clinical action after CHAP receipt to evaluate the long-term impact of the CHAP.

Autism CRC

The Cooperative Research Centre for Living with Autism (Autism CRC) is the world’s first national, cooperative research effort focussed on autism. It provides the national capacity to develop and deliver evidence-based outcomes through our unique collaboration with the autism community, research organisations, industry and government.

QCIDD forms part of Program 3, which aims to support adults to find a place in society. Dr Cathy Franklin is leading our project to develop online tools, resources and training to improve health and wellbeing among autistic adults. Other Autism CRC teams members include postdoctoral research fellow Dr Katie Brooker and PhD student Pia Bradshaw. We will be updating our online tools and resources on the Health Hub on the Autism CRC website.

These are some of our projects:

The Autism CHAP

Led by past postdoctoral research fellow, Dr Anna Urbanowicz, we adapted the Comprehensive Health Assessment Program (CHAP) for autistic adults and adolescents with intellectual disability.

Autistic adults, support people and health professionals were involved in the adaptation. The Autism CHAP was then piloted with 7 autistic adults, their support people and GPs. The Autism CHAP was further revised based on feedback from the pilot and input from autistic people.

The final version of the Autism CHAP is currently being edited and a research version for further testing will be available shortly.

If you are interested in being involved in a larger evaulation of the Autism CHAP, please contact Katie Brooker.

GP Professional Development – check

The Royal Australian College of General Practitioners (RACGP) produces a Continuing Professional Development (CPD) activity called check. These are peer-reviewed clinic cases, written by expert clinicians. Each unit includes four to six clinical cases with answers, followed by 10 multiple choice questions (MCQs), as well as references and resources.

Our team contributed three cases on autistic individuals:

Daniel's dad is worried about his development. Paediatric health, unit 541, August 2017.
Charlotte's anxious and doesn't want to go school. Adolescent health, unit 542, September 2017.
Malcolm's behaviour is becoming increasingly difficult to manage. Vulnerable populations, unit 543, October 2017.

These activities are available to members of the RACGP via the gplearning portal.

Autism HealthPathways

Lead by the Mackay Health Pathways team, we worked collaboratively to develop a suite of clinical pathways for primary care clinicians about autism.

The Pathways launched in August 2019 and are available across the HealthPathways community in Australia, New Zealand and the UK.