Supporting the woman, supporting the mother: Examining the interface between the NDIS and family support services for mothers with intellectual disability in New South Wales

Project Summary

This project looked at how services are supporting mothers with intellectual disability to care for their children. Although disability support is funded through the NDIS, family support is a State Government responsibility. This research looked at how the NDIS identified and supports needs of mothers with intellectual disability, and how this integrates with NSW State Government early intervention family support services.

Contrary to widespread and ableist assumptions about their parenting incapacity, women with intellectual disability can and do parent successfully when they receive timely and appropriately-delivered supports, combined with informal assistance from family, friends and/or allies. As women are typically the primary caregivers of children, the primary research focus is on mothers; however, these findings have broad relevance for all parents with intellectual disability.

The study uncovered barriers to service integration in NSW and proposed national research to address them.

Mothers with lived experience of both service systems co-designed case studies and accessible evidence-informed resources, giving voice to a group whose voices are rarely heard.

The research was undertaken with six paid co-researchers with lived experience of disability: Rachael Bartley, Lisa Bartulis, Renee Cross, Chaya Hutchens, Ami Newland and Margaret Roberts. The co-researchers brought to the project experiential wisdom based on their first hand knowledge of receiving family and disability-focused services. A parent facilitator was employed to support genuine collaboration with the co-researchers on the project. The facilitator was Rachel Tozer, who was employed by the WASH House.

The project used a co-design methodology with an Expert Reference Group convened to guide
the project. The Reference Group included the four investigators from the University of
Sydney, six co-researchers with lived experience and five professional stakeholders

See infographics below for a visual summary of the project's findings.

Program data

Students in the programs were mostly young (18-25) and middle- or upper-class
Average enrolments across both programs is less than 10 students per year
Numbers are limited by available funding
Keeping detailed and accurate records about people with intellectual disability from a range of backgrounds is important

Interviews

Mostly positive experiences
Students enjoy learning and being able to choose what to learn
Students experience social development and inclusion
Students go on to further opportunities after graduating (e.g. paid employment; further study)
Some students found it hard to make friends and felt excluded from mainstream university life
Some students reported lack of post-program direction, support and planning

Further research is needed into facilitating meaningful social inclusion.

The findings from this research will be shared widely through:

Two Australian roundtables with representatives from Australian universities and key higher education stakeholders
National Position Paper to influence government policy
Community of Practice on inclusive universities for people with intellectual disability
A guide for universities on best practices for running an inclusive program
Program student stories in Easy English summaries, fact sheets, infographics, videos
Three peer reviewed academic articles will be published

Project Team

Organisations

University of Sydney
University of New South Wales
FAMS provides support and advocacy for early intervention services for vulnerable children and families across NSW
WASH House is a community-based organisation working with women and girls impacted by poverty, social disadvantage and violence in Western Sydney
People with Disability Australia (PWDA) is a national disability rights, advocacy and representative organisation led by people with disability

Investigators

Dr Susan Collings (Lead Investigator) University of Sydney
Dr Margaret Spencer, University of Sydney
Dr Gabrielle Hindmarsh, University of New South Wales
Dr Nikki Wedgwood, University of Sydney

Partners

Ms Julie Hourigan Ruse, Chief Executive Officer, FAMS
Catherine White, Acting Executive Officer, WASH House
Ms Leonie Hazleton, Project Manager, People with Disability Australia

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Supporting the woman, supporting the mother: Examining the interface between the NDIS and family support services for mothers with intellectual disability in New South Wales

Project Summary

Project Team