Supporting parents with disability and families of children with disability

Pregnancy, birth and early parenting are significant times in anyone’s life. This is no different for families that live with disability. Parents with disability deserve inclusive care that is accessible, respectful, and provides adjustments and supports where needed. Families welcoming a child with disability also need support that is inclusive and affirming, setting the foundation for positive beginnings.

Too often, people with disability are overlooked in maternity care, despite making up nearly one in ten of all birthing parents. Research shows that women and birthing people with disability are frequently invisible within the system, face barriers to accessible care, and miss out on the adjustments they are entitled to. Parents of children with disability also report a lack of timely information, inclusive support, and recognition of their needs after birth.

We recognise the challenges faced by parents who receive news during pregnancy that their baby may have a disability or health condition. This can be an overwhelming time, filled with complex emotions and decisions.

Families deserve access to accurate, non-directive information, compassionate counselling, and opportunities to connect with others who have lived experience. Better Births Illawarra supports approaches to maternity care that are non-judgemental and centred on parents’ rights to make informed decisions.

Better Births Illawarra is working to build a maternity and post-partum care system that is inclusive, respectful and responsive to all families.

This includes:

  • ensuring accessible facilities and communication supports (including Auslan interpreting)

  • training health professionals on disability inclusion and adjustments

  • embedding lived experience voices in service design, delivery and evaluation

  • connecting families with the rights-based advocacy, counselling and peer support.

Please get in touch if you would like to support our work.

Resources

Women and birthing parents with disability

NDIS participants

  • Illawarra Advocacy, a local provider of disability advocacy

  • PANDA, who are developing a new course for Supporting Transitions for Parents with Neurodivergence

Parents of children with disability

  • Miracle Babies Foundation – working to improve, support and enhance all lives impacted by premature or sick birth

  • Carer Gateway - an Australian Government program that helps carers with emotional and practical support.

  • Belongside Families - an uplifting, supportive, and educational space for parents and carers of children with a developmental delay and disability. It’s a community made by families, for families.

  • Children and Young People with Disability Australia - a national organisation that promotes equal opportunity and full inclusion for children and young people with disability (0-25 years) across Australia. 

  • Plumtree - provide free online parent education workshops, for parents with for children aged birth to 8 years with a disability or developmental delay.

  • Envisage - a free strength-based program, providing evidence-based frameworks and practical strategies that have worked for other families raising children with disability.

  • Illawarra Families for a better NDIS – a local Facebook group for parents of children with disability navigating the NDIS.

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Our work is conducted on what always was and always will be Aboriginal land — the Countries of the Wodi Wodi, Wandi Wandandian, Dharawal, Yuin of the Yuin Nation. Our work is committed to justice for all people including the sovereignty of First Nations people, knowledge systems and practices. In our work, we commit to reverence, healing, respect, responsibility and reciprocity with all beings, the land, sky, seas and waterways and pay our deepest respect to Elders past, present and emerging.