Asking questions so new parents with disabilities get better answers
People living with disability or chronic/ ongoing health challenges, who have parent/ carer/ guardian responsibilities for a child aged five or under, are invited to share their experiences for national study.
Pregnant with her first child and managing a spinal condition, chronic migraine and chronic pain, Meg Blin asked her midwife if there were any parenting support programs specifically for people with disabilities.
“The answer was just ‘no’ – and it was an answer I got over and over again,” she said.
Standard supports for new mums – from birthing classes, to breastfeeding advice, and inaccessible baby activities – didn’t cater to Ms Blin’s extra physical challenges.
“More than 20 per cent of Australians live with a disability, I knew I couldn’t be the only mum feeling isolated and unsupported,” she explained.
Three years on and now parenting a 2-year-old and a 5-month-old, the determined Sunshine Coast mum is asking new questions.
Ms Blin has built a community around her Disability and Motherhood social media platform, and is working with researchers from University of Sunshine Coast and CQUniversity to understand diverse challenges people with disabilities face in their parenting – and where targeted support could improve health and wellbeing.
The unique study acknowledges one of the biggest frustrations – that the overwhelm of raising young children and managing disability leaves little time or energy to advocate for change.
Understanding challenges
The national study seeks parents with disability, chronic health conditions, or ongoing health challenges to share experiences of raising young children in Australia.
With questions about wellbeing, social support and health care services, the survey takes about 30 - 45 minutes, and includes a helpful ‘come back later’ option for busy parents.
Take the Parenting with a Disability survey here.
CQUniversity researcher and Lecturer in Physiotherapy Sasha Job says Ms Blin’s experiences reflect the lack of research about parents with disability.
"People living with disability bring a wealth of strengths, skills and experiences to their parenting, but we know there can also be barriers that make accessing support and services more challenging," Ms Job said.
"This research will identify where gaps exist, and what changes and improvements could better support families."
Participant must be an Australian parent, carer, or guardian aged 18 years or over, identify as having a disability, chronic health condition, or episodic health condition, and have at least one child aged five years or younger.
"Parents are experts in their own lives, and their voices are essential in shaping future services, programs, and policies," Ms Job said.
Findings from the study will be shared with health professionals, community organisations, and policymakers, to inform future inclusive supports for parents with disability and their children.
“Toughest possible position”
Earlier this year, Ms Blin’s experience founding a mums’ group for people with disabilities featured on ABC News.
Having her second child and connecting with more new mums, she’s found women talking more openly about managing parenting around conditions like ADHD, autism and endometriosis.
“Often women don’t identify as someone with a disability, but they absolutely see that standard parenting support and advice don’t meet the challenges they’re facing,” she explained.
Ms Blin helped designed the survey, including an introduction acknowledging participants: “I want to sincerely thank you for taking the time and energy to complete this survey, quite possibly after a long bedtime routine, a chaotic daycare drop-off, or whilst sitting in the waiting room for an appointment that is running "just" a little behind.”
She acknowledges the “irony” of asking people with disabilities to find time for the research.
“We really are in the toughest possible position to fix this situation for ourselves – advocacy is hard, and this stage of life has us at our most fatigued!” she said.
“But to make change happen, you really do have to show where the challenges and the barriers are – I know it’s a tough ask, but I hope the responses we get are the proof we need to finally make change happen.”
The research is also seeking clinicians, support workers, volunteers and organisations who support parents to share their experiences.
