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When Rose Mitchell was 10, she felt like she became a parent.
“The minute he was born, something shifted within me,” she said of her brother Daniel Rata. From that day on, for decades, the pair were inseparable.
Now, no matter how often she visits her brother, it never feels like enough.
“I carry a lot of guilt with having my own independent life away from him,” she said. “I struggle with balancing being that caretaker for him … with trying to find my own identity outside of being his sister.”
For the carers and families of the approximately 117,000 people with an intellectual disability in NSW, finding and accessing support in a fragmented system is “exceptionally hard,” said Dr Alexis Berry, vice president of the Australian Association of Developmental Disability Medicine.
Previously, she said people with intellectual disabilities would be known to their local government service, which acted as a “one-stop shop”, with a case manager assigned.
“With the introduction of the NDIS, it’s become a much more individualistic approach, so it’s up to the individual to navigate the system – there’s nobody there helping them do that,” Berry said.
Rata needed to be frequently hospitalised due to seizures, and his frustrated, violent meltdowns became difficult for his family to manage as he aged into a fully grown adult who didn’t know his own strength.
“There was a lot of fear around taking him outside, which would have helped him because he needs that stimulation,” Mitchell, who is based in Sydney’s inner-west, said. “We felt like we had to control his environment at all times, just in case, because we just didn’t have the answers.”
It wasn’t until Mitchell’s family was connected with the Sydney Local Health District’s Specialist Intellectual Disability Health Team (SIDHT) that she realised she wouldn’t have to spend her whole life as the primary carer for her brother. Without their support, “I have no idea where we would be”.
There are just seven SIDHTs teams across the state’s 15 local health districts. Each small team is made up of a doctor, nurse and other health professionals, and aims to address the complex health needs of people with an intellectual disability.
“Only a small proportion of the people who really could benefit from these teams are able to access them and get that benefit,” Jim Simpson, senior advocate for the Council for Intellectual Disability (CID) said.
Funding for existing teams was not determined by local population need, but instead by which LHDs had the organisation and infrastructure in place to put in a funding bid at their inception in 2019, according to advocates.
Simpson said this has created a funding inequity, and the CID is now calling on the government to boost services in the areas with the highest need, and expand to 15 teams: “In other words, a team in every local health district”.
Health outcomes for people with an intellectual disability remain “unconscionable,” Simpson said.
Compared to the general population, they are more than twice as likely to die potentially avoidable deaths, and die an average 27 years earlier. They are also over-represented in the healthcare system, with hospitalisation and emergency presentation rates twice as high, and admissions also twice as long, and twice and expensive.
A 2025 evaluation of the existing SIDHTs commissioned by NSW Health found the teams improved short-term and intermediate outcomes for clients. Simpson said expansion of the teams has the potential to save the health system overall through preventative healthcare and reduced hospitalisations.
In a statement, NSW Health Minister Ryan Park said since 2020, the SIDHTs have assessed more than 3700 people, and his government would continue to engage closely with the CID on their funding. He said the government invested over $6 million to operate the NSW Intellectual Disability Health Service each year.
When clinicians in Rata’s SIDHT linked his behaviour to anxiety and put him on new medication, Mitchell said everything changed for their family, as the fear of taking him outside dissipated.
“It just completely levelled out the frequency of the meltdowns, and it meant that he could start integrating into social groups again,” she said, allowing the siblings to return to their favourite activities.
“We would go to the local basketball courts and he would play for hours … he would make friends in the park,” she said. “I could go and chill on the sidelines, and he would just be feeding his soul because he’s socialising and he’s playing basketball and doing all the things that he loves.”
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