‘I’m frightened for my eight-year-old daughter’

An Aussie mum says she’s been left “frightened” after her eight-year-old daughter Macie’s behaviour escalated. Warning: Distressing

Sarah MacRae was “frightened” for her eight-year-old daughter, Macie.

She also desperately tried to find help.

Then one night it all came to a head when Macie punched through a glass window.

“She nearly died,” says Sarah. “I held her while she was bleeding and thought my daughter might die in my arms.”

Macie has a dual diagnosis of Autism Spectrum Disorder (ASD) and Attention-deficit/hyperactivity disorder (ADHD) and is currently being investigated for absent seizures, which are a brief and sudden loss of consciousness.

While Macie’s autism and ADHD diagnoses have been known for a while, the absent seizure activity, as well as the early signs of mental health disturbances, caused a significant worsening of her symptoms over the past year.

“They think the seizures can cause changes to her brain, and in addition the medication she had been on caused her to go into a sort of psychosis,” Sarah says, adding that the personality changes she’s observed have left her devastated and worried for her little girl.

Sarah MacRae says her daughter Macie’s seizures have caused a dramatic and frightening escalation in her behaviour. Picture: Supplied

Before the incident with the glass window, Sarah had been searching for help but found they were “falling through the gaps” between health services, education services and the NDIS.

“I kept telling them – ‘I’m getting frightened, this is escalating and I am worried about her safety, please help me’,” Sarah says.

“The gathering of data to determine what funding and support my child gets is just so slow. It’s exhausting – we’re talking about no sleep, and more than 50 escalations per day.

“Two days before it happened, I was on the phone to the CoS (Coordination of Support) Provider from the NDIS, telling them I was frightened and begging for something we could do, but it just moves too slowly to properly support people in crisis, particularly children.”

The night Macie nearly died she was in her room and Sarah was outside.

“She started screaming at me through the window,” Sarah explains, “I was trying to communicate with her through the window to try and calm her down. She became increasingly agitated and aggressive, culminating in her attempting to strike me through the window.

“Despite my pleas for her to stop, she punched the window again, resulting in severe lacerations to her left wrist.”

Sarah says that the lack of emergency mental health support for children under 15 has left her without adequate support for Macie and herself. Sarah alleges that when Macie was taken to hospital for treatment, she was sedated for over 14 hours and left in a soiled bed in a mismanagement of her care.

Macie broke a window and Sarah thought she was going to die from blood loss. Picture: Supplied

Macie also kicked a hole in the wall in a previous escalation. Picture: Supplied

A spokesperson for NSW Health told news.com.au that it is committed to ensuring that people of all ages and throughout all areas of NSW have access to the best possible mental health care and treatment.

“There are a range of hospital and community services available for children and adolescents in need of mental health support across NSW, including those in a crisis situation,” the spokesperson said, “including Safeguard teams across the state [that] provide innovative and best practice community care to children and adolescents experiencing acute mental health distress, and their support network.”

Sarah, who is the managing director of a Central Coast disability support service herself, says that even with her experience on the ‘other side’ of the system, she has found information hard to come by, and the processes difficult to navigate.

“I’ve been a passionate disability advocate for years, and I have worked in the space myself as an NDIS provider, and I can honestly say I never realised how many gaps were out there until we started falling through them,” she says.

“It’s not all on the NDIS either, it’s about the way the different departments – particularly Health and Education – have trouble working together to properly support people with complex disability and mental health issues.”

Sarah MacRae has felt overwhelmed trying to find help for her daughter Macie. Picture: Supplied

Sarah reports that prior to her daughter’s injury, not only had she reached out through her Support Coordinator to NDIS and but she had also attended a number of health services.

The time for change is now

A landmark independent NDIS review handed down its final report last month, making 26 recommendations and 139 supporting actions about how changes to the service could improve the system.

Included in those recommendations is a call for better community access to the NDIS, connected services, and better checks for young children to support them early if needed.

Those recommendations now sit with the government as the logistics of implementing changes are discussed.

National Cabinet has agreed to implement legislative changes to the NDIS to improve the experience of participants and restore the original intent of the Scheme to support people with permanent and significant disability, within a broader ecosystem of supports.

National Cabinet also agreed to together design additional Foundational Supports to be jointly commissioned by the Commonwealth and the states.

The full Government response to the Review will be released in 2024.

“I think a lot of those 26 recommendations have really hit the nail on the head in terms of what needs to be changed but it’s just about whether we can be confident that those changes are going to go through and result in a system that works,” Sarah says.

“There is a lot of talk about early intervention, but in my experience, not a lot of action,” she continues, admitting the experience has taken a huge toll on her mental and emotional wellbeing.

“I found it difficult to walk back into the house for a while,” she says quietly, “there has been a lot of trauma for us both.

“Macie is my whole world. And it’s so sad, because a lot of people who are seeing her for the first time – they don’t know the little girl she was before she started having these extreme behavioural changes. I just want to help her and keep her safe, and it scares me to know how many other families are going through the same thing right now.”

Bek Day is a freelance writer.