OTQualitativeAustralian occupational therapy journal2024

The experiences of families of children with cerebral palsy and complex disability after three years accessing the National Disability Insurance Scheme.

Maddison O'Neill, Helen Bourke-Taylor, Anoo Bhopti and 1 others

PMID 38839565

WHAT IT FOUND

Parents of children with cerebral palsy or similar complex disability said the NDIS was essential, but navigation, equipment delays, and staff knowledge gaps remained stressful after years in the scheme.

They valued occupational therapists who understood it.

Key findings

01Six participants said the family could not provide what their child needed without the NDIS, and seven described difficulty retaining employment because of caregiving demands.

02Five parents described navigating the NDIS as stressful and taxing, and equipment approval delays ranged from months to years.

03Three parents said occupational therapists knew the NDIS and what to ask for, and three wanted health professionals to have more influence over supports.

STILL TO COME

How it was doneWhat they foundWhat it means for OTs

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What it does not show

Only eight parents from one service provider in Victoria were interviewed, and all were the parent most involved in the child's NDIS plan, so the themes may not represent other families or providers. The study is qualitative and reports parents' perceptions; it does not show whether any service, funding change, or therapist action improved child or family outcomes. All authors identify as occupational therapists, and one author worked at the service provider, although that author was shielded from recruitment. Children who had been hospital inpatients for more than three months in the last 12 months were excluded, so families with recent prolonged hospital care are not represented.

Declared interests

The authors declared no conflict of interest.

The easy way to misread this

Do not read this as evidence that occupational therapists or NDIS supports improve participation or wellbeing. The study describes parents' perceptions and cannot test whether these services caused changes.

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