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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

The impact of child self-regulation difficulties on parents: A qualitative study

The capacity for children to self-regulate is an important developmental task of early childhood, with caregivers playing an integral role in self-regulation development. While caregivers' emotions and behaviors are known to impact child self-regulatory capacity, the impact of child self-regulation difficulties on parents is less understood. 

The United Nations convention on rare diseases—A framework for research prioritization

Psychometric validation of the quality of life Inventory − Disability (QI-Disability) among patients with Lennox-Gastaut syndrome and Dravet syndrome

To evaluate the psychometric properties of the Quality of Life Inventory -Disability (QI-Disability) for individuals with Dravet syndrome (DS) or Lennox-Gastaut syndrome (LGS), two rare developmental and epileptic encephalopathy conditions.

Beyond Seizures as an Outcome Measure: A Global Severity Scoring System for CDKL5 Deficiency Disorder

CDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy (DEE) associated with multiple impairments and comorbidities. Outcome measures for disease-modifying clinical trials for DEEs should measurably capture a spectrum of caregiver priorities and be externally validated.

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