Supported Decision Making for women with ID in pregnancy

Northcott Innovation and disAbility Maternity Care have been working on a project to create information and resources for women with intellectual disability (ID) to make supported decisions during and after pregnancy. We know there is some really good information and supports available, but there are also gaps in meeting the needs of mothers with ID specifically.

The project team (NI and disAbility Maternity Care) have completed two phases of co-design workshops for the project:

  • The first phase co-design workshops (one in North Parramatta and one in Port Macquarie) gave us (the project team) perspectives on what went well for participants and what didn’t go so well during and after pregnancy.
  • The second phase co-design workshops (again, one in North Parramatta and one in Port Macquarie) explored content detail for six different content themes about decision making (identified as most wanted/needed in our first phase workshops/interviews).

What’s next?
We are currently drafting six different resources (although two are slightly different from what we originally expected… because that is what happens in co-design!). We will hold third phase co-design workshops to gather input/approval from our participants before finalising the resources for distribution. We estimate resources will be available early February 2024.

Project highlights so far
NI and disAbility Maternity Care have thoroughly enjoyed working on this project. Some of the with highlights to date being:

  • Meeting the participants and marvelling at how brave and honest they have been to share their stories, which haven’t always been positive stories (three of the participants have had children removed from their care).
  • Seeing how participants supported other participants, some who knew each other before the project, but others who didn’t.
  • Seeing how empowering it has been for the participants who are working with us as part of this project.
  • Appreciating Dr Margaret Spencer (Senior Lecturer | Director of Field Education – Social Work & Policy Studies | School of Education and Social Work | Faculty of Arts and Social Sciences) who has been incredibly supportive of our project and we are extremely grateful for her advice and contacts.
  • Seeing how the voices of the people with who we are working are helping to inform resources for many other people with intellectual disability for years to come!!

Quotes from our participants
Some are heartbreaking, but need to be shared:

  • “Pray for the best but expect the worst – but you can always try again. Just keep on trying.”
    “Having a baby and having it taken away is like having a $2 million dollar home and watching it burn to the ground.”
  • “DCJ got my hopes up during the pregnancy but told me my baby was going to be removed just before going into labour.”
  • “Please understand that I can make decisions for me and my baby!”

Keen for more information?
If you would like more information about our project, please contact us via:
P: 0428 171 326

0428 171 326

This project is funded by a grant from Council for Intellectual Disability and is part of a project about supported decision making called My Rights Matter.

Find more information about the CID, their Supported Decision Making hub and the My Rights Matter project here.