For families of children with autism or intellectual disability who also battle challenging behaviours, such as self-injury or aggression, day-to-day life can be incredibly difficult, tumultuous, and isolating. When these behaviours reach a crisis point, families often turn to hospital emergency departments as a last resort. But what happens after the immediate crisis has passed?
“There was no dedicated service for these children, no care plan to follow them up after a crisis,” said Dr Daryl Efron, a developmental-behavioural paediatrician at The Royal Children’s Hospital (RCH).
“A child might be physically restrained, brought in by ambulance, given sedation medication, then discharged once things settle down. But when I asked families what support they received after that, the answer was often, ‘We’re still waiting’;” said Daryl.
Recognising the urgent need for a more coordinated and compassionate approach, Dr Efron developed ISAID – Improving Support for Autism and Intellectual Disability – a leading innovative program providing intensive, tailored support to families after their child presents to the RCH Emergency Department (ED) in behavioural crisis.
Currently, around two to three children per week arrive at the RCH ED with these challenges, a number that is steadily increasing.
“It’s a very vulnerable group we’re working with. Many of these families are just surviving day-to-day. Our goal is to wrap support around them, not just medical, but practical and emotional too, so they can function better as a family,” Daryl said.
Over a three-month period, the ISAID team, which includes a paediatrician, social worker, and two care navigators, work closely with each family to assess unmet needs and implement changes that can ease the immediate and immense pressure. Together, they provide a trauma-informed, highly personalised care plan that addresses both medical and practical needs. This might involve reviewing medications, identifying overlooked medical issues like sleep disorders or pain, or improving access to services through the NDIS. Importantly, the team also interfaces with community providers.
“We look at the crisis and try to understand how things have gotten to this point for this particular family, and how can we improve the care, with leadership from the hospital but also engaging with community partners so it’s less likely they’ll reach crisis point again,” Daryl said.
Since expanding the model to three months, the team has continued to see a significant drop in emergency visits and increased engagement with supports in the community.
“Equally important to me is the qualitative responses we have received from the families involved,” Daryl said.
“The most common thing we hear is, ‘Finally, someone gets our predicament. We’re so grateful to have someone that we can call for support and guidance.’ These families have been through so much. Our job is to restore some sense of hope and control,” Daryl said.
ISAID is among the first programs of its kind in Australia – its innovative and unique model recently attracting industry recognition with a Children’s Healthcare Australasia Medal of Distinction. Additionally, it’s receiving national attention, with other states and children’s hospitals now looking to replicate the model.
“We designed it to be scalable. This isn’t just exclusively an RCH issue, there are kids and their families battling these same challenges everywhere, and their needs are complex but not unsolvable,” Daryl emphasised.
The ISAID program is having a life-changing impact on not only the kids and families it touches, but also the healthcare workers and system that cares for them – and that was only made possible thanks to extraordinary philanthropic support.
“The support from philanthropic funding has been amazing. Prior to this service, these families were receiving ad hoc support, but now there is a dedicated team, and without this funding it just wouldn’t be possible, so we are hugely grateful,” Daryl said.
The impact of the ISAID program is already clear. In an early pilot, emergency department re-presentations were reduced by 40 per cent within three months and 29 per cent by six months following the six-week intervention.
The ISAID Program is supported by:
The William Buckland Foundation
Brian M Davis Charitable Foundation
The Percy and Ruby Haddy Foundation
Broadmeadows Auxiliary
Nigel & Patricia Peck Foundation
South Western Auxiliary
Chakorn Sangsurane