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Child Disability

Improving the lives of children with a disability and their families sits at the core of our team.

Around 1 in 10 children have a disability that impacts on their ability to function in the same way as other children.

Sometimes they are born with these disabilities, sometimes they develop after birth, and sometimes they are caused by illness or injury. There are many types of disability, including intellectual, neurological, physical, sensory, and psychological, which can influence how the child thinks, behaves, and develops skills.

Disabilities can create many barriers for children and their families, which can significantly alter their quality of life.

Our vision is that all children impacted by disability and their families will live their best lives. We will support this vision by conducting an evidence- and consumer-informed program of research, underpinned by excellence in study design, analysis, and reporting.

To achieve this vision, we will:

  1. Engage with children with disability and their families across all walks of life to better understand their needs,
  2. Prevent or reduce disability and ensure that our research helps support meaningful and impactful changes,
  3. Engage key stakeholders to improve access to services and influence policy and practice.
  4. Collaborate with the community, health professionals, service providers, researchers, and policy makers.

Team leader

Professor Jenny Downs
Professor Jenny Downs

BApplSci (physio) MSc PhD

Head, Child Disability

Team members (16)

Dr Emma Glasson
Dr Emma Glasson

BPsych BSc (Hons) PhD

Senior Research Fellow

Senior Research Officer

Jacinta Saldaris
Jacinta Saldaris

BSc (Hons), PhD

Senior Research Officer, Child Disability

Kate Dorozenko
Kate Dorozenko

B Psych (First Class Honours), PhD (Psychology)

Senior Research Officer

Senior Research Fellow

Jess Keeley
Jess Keeley

BPsych(Hons), PhD (Psychology)

Research Officer

Peter Jacoby
Peter Jacoby

BA (Hons) MSc

Biostatistician

Clinical Associate Professor Raewyn Mutch
Clinical Associate Professor Raewyn Mutch

MBChB., DipRACOG., Cert.HPRT, FRACP., PhD

Research Officer

Carolyn Drummond
Carolyn Drummond

B. App Sci (Physio.)

Research Officer

Mohammed Junaid
Mohammed Junaid

BDS, MDS, MFDS RCPS (Glasg.), DDPH RCS (Eng)

Honorary Team Member

Dr Kingsley Wong
Dr Kingsley Wong

MBBS, MPH, MMedStat

Research Officer

Caitlin Gray
Caitlin Gray

BPsych MPH PhD Candidate

Research Assistant and Student

Functional skills in MECP2 duplication syndrome: developmental dynamics and regression

MECP2 duplication syndrome (MDS) is an ultrarare, X-linked neurodevelopmental disorder that is poorly understood in terms of its natural history and phenotypic variability. There is limited information on how individuals with MDS acquire, retain or lose fundamental functional skills (gross motor, purposeful hand function and communication) - that of which this study aimed to better characterise in the largest case series to date.

Healthcare SAVVI: Exploring health literacy and parents' experiences in supporting the health of children with intellectual disability

Research on the health literacy of parents with children with intellectual disability is limited. Understanding parents' healthcare skills and needs is essential for improving children's health and developing effective support. In this study we aimed to (1) explore the health literacy skills of parents that enabled them to support the health needs of their child with intellectual disability and the factors influencing these skills, and (2) identify opportunities to support parent health literacy.

Caregiver-reported quality of life in individuals with developmental and epileptic encephalopathy and other severe neurodevelopmental encephalopathies

Information on factors contributing to quality of life (QOL) informs meaningful patient-centred care. We evaluated factors influencing QOL in individuals with developmental and epileptic encephalopathy (DEE) and other severe neurodevelopmental encephalopathy conditions using hypothesis-free regression tree analysis.

Development and initial validation of the Communication Inventory Disability – Observer Reported (CID-OR): a measure of communication in CDKL5 deficiency disorder

CDKL5 Deficiency Disorder (CDD) is a rare neurodevelopmental disorder characterised by early onset seizures combined with complex healthcare needs and developmental impairment that influence functional domains including communication. Communication is a high priority domain for families but currently used measures demonstrate floor effects. 

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