Sarah MacRae is not only a mum and advocate but the Managing Director for a leading Disability Service in NSW, 24/7 Care Disability Services and Activity Hub. Even as an experienced professional Sarah is at breaking point trying to navigate the systems that should be in place to not just support young people but respond during crisis.
In the last month Sarah’s own 8yo daughter experienced an escalation in her behaviour, health care and mental health needs. After almost 2 weeks Sarah is till pleading with services for support and an adequate response.
The challenge for NDIS to respond locally and quickly to times of crisis and increased need is still something that appears to confound the agency and its delegates who appear unable to prioritise and respond.
“Our concerns about our daughter's well-being had become increasingly urgent. She exhibited acts of violence, property damage, and unpredictable outbursts, not only towards us but also towards others”, said Sarah today.
“The situation became so challenging that we had reached out to her support coordinator multiple times and reported multiple incidents of our daughter's dangerous behaviours and police attending. Despite our efforts to seek assistance and guidance, the situation continued to worsen.
Unable to secure additional funded supports or some sort of response for her 8yo daughter from NDIS in a timely way or an adequate response from other local agencies, Sara was left to manage the best she could while the slow mechanisms of a huge Government Agency like NDIS failed to prioritise and respond to a situation that was potentially life threatening.
Sarah described how her daughters “emotional state deteriorated rapidly one night and she was destroying the house and at that moment was in her room. I was outside and she started screaming at me through the window so 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. Blood spurted uncontrollably, creating a horrifying scene”.
While those who may never have had to face supporting a child with such extreme support needs might judge and ask ‘why not call for help’, Sarah reports that not only has she reached out through her Support Coordinator to NDIS, she has called Police and had them attend regularly, attended Health Services, Hospital and has engaged the Critical Joint Response Child Protection Team who has cleared her daughter for discharge following her recent incident this week.
Far from helping, the actions of the Health Care system often make matters worse. Sarah reports that sadly even something as simple and straight forward as discharge planning was mishandled. Following a break down in her discharge plan and continued admission due to basic logistical delays further deterioration in her daughters mental health has reportedly occurred.
Sarah alleged “they [hospital] have mismanaged her care, calling a code black, and sedating her for over 14 hours in a soiled bed, which is unacceptable. They cannot provide special care or fund her support adequately.
“My daughter’s care has been inadequate and poorly managed, highlighting a gap in the system.
This is not a case where a child does not have a family and team at home who are unable to support her. It is a child and family that has the basic human right to access appropriate services when needed and especially during a time of escalation and multiple agencies unable to action what is clearly reasonable and necessary as a priority.
Sarah reports that not only did the Education System not respond also with planned and informed supports but also stated that “she could not be supported”, resulting in school changes.
Sarah reports that without a response from NDIS she has had to try and self-fund staff and services that her daughter has a basic human right to access but has been denied due to inaction and a lack of timely responses.
Sarah alleged, “they [hospital] do not have the capacity to provide specialised care for her daughter's behavioural and disability needs, I am desperately pleading for help and action to prevent this from happening to others suffering and unsupported families. I have been a strong advocate for our disability community on the Central Coast [NSW] for over 25 years.
“My journey began in 1997 at Peat Island Residential Centre, and I continue to support and advocate for the transition to community living. Now, I find myself fighting for our younger generation, addressing the gaps in services and support not only in the health sector but also in the education department and the NDIS. I anxiously await your response, as this is a mother's plea for her little girl, said Sarah.
National Disability Advocate, Mr River Night today explained that “one of the major challenges the NDIS has as an agency is its difficulty with returning to local, quick responses when it is required. Simply calling and talking to a local delegate in a timely way is next to impossible and decision making for funding takes longer now that it ever has before. Gone are the days I could call a local NDIS team leader and escalate a serious matter quickly to avoid catastrophe”.
Sarah MacRae (NSW) and Mr River Night (QLD) are both availbale for further comment