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Commentary

Mother of a problem! Are the Needs of Mothers with Intellectual Disability Being Addressed in the NDIS Era?

Authors:

Nikki Wedgwood ,

The University of Sydney, AU
About Nikki
Nikki Wedgwood, PhD, is a sociologist in the School of Health Sciences at The University of Sydney, where she teaches future health professionals about the social determinants of health and the social model of disability. A sociologist with a passion for social justice, her areas of expertise include disability, gender, embodiment, sport and life history research. Her previous research has included looking at the role of sport in the lives of young people with disabilities and exploring the transitioning to adulthood of young Australians with disability. Current research projects include an examination of the interface between the NDIS and family support services for mothers with intellectual disability in New South Wales and an investigation of a continuum of best practices for the inclusion of students with intellectual disabilities in the Australian higher education sector.
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Susan Collings,

The University of Sydney, AU
About Susan

Dr Susan Collings is Research Fellow at the Research Centre for Children and Families at the University of Sydney. She is Program Lead, Disability and Child Protection and an affiliate with the Centre for Disability Research and Policy.Her research focuses on understanding and supporting families and communities, particularly in the context of child protection and out-of-home care. She is internationally recognised for her research about parents with intellectual disability and their children and has contributed to policy, practice and research on complex support needs, birth family contact and disability support planning. Dr Collings uses arts-based methods that open space for people with lived experience to challenge dominant narratives and empowers them to be leaders in system change. She is currently undertaking inclusive research to inform clinical practice in parenting assessment with parents with intellectual disability. 

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Margaret Spencer,

The University of Sydney, AU
About Margaret

Margaret Spencer PhD BSW BTh Winston Churchill Fellow (1999)lectures in the Social Work Program in the Faculty of Arts and Social Sciences, University of Sydney.  Her doctorate and ongoing research focus is on parenting with intellectual disability. She is a research affiliate with University of Sydney’s Research Centre for Children and Families and the Centre for Disability Research and Policy; executive member of the IASSID’s Parenting Special Interest Group; and member of the Australasian Society for Intellectual Disability (ASID). Margaret has over 35 years practice experience working with parents with intellectual disability and their children.She was disability family consultant with FAMS NSW (1995-2003) and coordinator of the Intellectual Disability Rights Services’ Parent Access Program (2009-2014) coordinated a specialist advocacy program for parents with intellectual disability involved in child custody matters in the NSW Children Court.  

 

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Gabrielle Hindmarsh

University of New South Wales, AU
About Gabrielle
Gabrielle Hindmarsh, PhD, is a Postdoctoral Research Fellow in the School of Psychiatry at UNSW, and a research affiliate at the Centre for Disability Research and Policy at The University of Sydney. She has research interests in the developmental outcomes and wellbeing of children who experience disadvantage, more specifically children with disabilities or who have parents with disabilities. Her work utilises population data to address the inequities families with child and/or parental disability experience. Currently she is exploring the health and wellbeing of children with disabilities in the NSW Child Development Study which has linked administrative health, education, child protection, and justice data. She is a member of the UNSW research team, commissioned by the NSW Department of Education, the lead agency of the National Disability Data Asset (NDDA) Early Childhood Test Case, which is examining the health, educational and social service use among children identified with disability prior to school entry.
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Abstract

The National Disability Insurance Scheme was introduced to provide a rights-based entitlement to support for Australians with disability, replacing the previous welfare-based policy framework. However, there are indications this rights-based support has not eventuated for mothers with intellectual disability, with growing reports of their reduced access to the parenting support to which they are entitled under the Convention on the Rights of Persons with Disability. Despite the NDIS promise of an equitable disability care system that would seamlessly complement State-funded services, reports from mothers with intellectual disability and their advocates suggest that cost-shifting between the Commonwealth and State Governments has reinforced service silos and opened up service gaps for a group of women who need support from both the disability and family support systems. Moreover, a concerning absence of reliable, transparent data makes it difficult to monitor the wellbeing of families headed by mothers with intellectual disability and also suggests these families are no longer a priority for Australian Governments. In this commentary, we advocate for: i) publicly available data on how the NDIS identifies and addresses the support needs of mothers with intellectual disability; ii) the integration of State and Commonwealth funding mechanisms to enable mothers with intellectual disability to access a parenting supplement linked to their NDIS funding and; iii) the rebuilding of national capacity in evidence-based parenting education and support to mothers with intellectual disability across all Australian service systems.
How to Cite: Wedgwood, N., Collings, S., Spencer, M. and Hindmarsh, G., 2021. Mother of a problem! Are the Needs of Mothers with Intellectual Disability Being Addressed in the NDIS Era?. Journal of Social Inclusion, 12(2), pp.67–74. DOI: http://doi.org/10.36251/josi.226
Published on 22 Nov 2021.

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