Rachael, along with her husband and two children live together on their family farm in Manjimup.

Her youngest daughter, Ava is three years old and has a rare form of epilepsy called Dravet Syndrome that causes frequent seizures. This condition has led to other issues for Ava including low muscle tone for which she requires a mobility aids, and respiratory issues.

Along with caring for her children and attending to Ava’s high care needs, it was important for Rachael to continue to work.

The cost of Ava’s therapies, equipment and the trips to Perth to attend specialist appointments had put a financial strain on the family. While support from the NDIS did help ease this stress, it was still necessary for Rachael to work.

For the last two years, Ava attended the local childcare centre so Rachael could work. The childcare team were open and willing to provide the support that Ava needs. With Rachael’s permission, they applied for the Inclusion Support Program so they could train staff to care for Ava.

They were able to train an Early Childhood Educator to recognise the signs that Ava was about to have a seizure, so they could get her to a safe space, and give her rescue medication or oxygen if needed.

Rachael felt comfortable knowing that Ava was being well looked after while she was at work. Ava loved attending day care; it was a chance for her to make friends and develop her social skills.

Recently, Rachael was notified that Ava’s trained Early Childhood Educator would be moving out of town, and due to staff shortages, her childcare centre was unable to find a locally-based replacement to support Ava.

Rachael was heartbroken that Ava could no longer go back there, but mostly she was stressed at what this would mean for her family financially.

Rachael accepted that she would need to find a new childcare centre for Ava as she didn’t have a support system of friends and family that she could ask for help. Rachael reached out to alternative care providers in town, however, there were limited options, and she was faced with the continued issue of staff shortages.

Backed into a corner, Rachael and her husband decided that the only option was for Rachael to quit her job and look after Ava fulltime, until she’s ready for kindy next year.

Feeling overwhelmed and disappointed by this outcome, Rachael turned to Kiind to ask about carer and financial supports. The Kiind Peer Navigators discussed her eligibility for financial supports and walked her through the application processes.

My family will manage for now, but I feel anxious over the lack of financial security during this time. There’s a gap in the early childcare supports that are available to kids with disability living in regional areas, and it needs to be addressed.

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