‘We just didn’t have the answers’: The lifesaving disability teams keeping families afloat

Rose Mitchell’s life changed the moment her brother Daniel Rata was born. At age 10, she felt like she had become a parent, and for decades, the two remained inseparable. Now, despite visiting regularly, she still struggles with the weight of being his primary caregiver. “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.” Her brother, who suffers from an intellectual disability, requires frequent medical attention due to seizures and unpredictable behavioral episodes. For years, the family lived under constant stress, fearing even simple outings because of his condition. “We felt like we had to control his environment at all times, just in case,” Mitchell explained. “Because we just didn’t have the answers.” This experience reflects the challenges faced by thousands of families caring for individuals with intellectual disabilities in New South Wales. According to Dr Alexis Berry, vice president of the Australian Association of Developmental Disability Medicine, the support system for such individuals has become increasingly fragmented. Previously, local government services acted as a “one-stop shop,” assigning case managers to help families navigate care. However, with the introduction of the National Disability Insurance Scheme (NDIS), the model shifted toward a more individualized approach. “It’s up to the individual to navigate the system, there’s nobody there helping them do that,” Berry said. Daniel Rata’s situation worsened as he grew older. His seizures required frequent hospitalization, and his meltdowns became harder to manage. As an adult with limited self-awareness, he struggled to understand his own physical limits. This led to dangerous situations for both him and his caregivers. “There was a lot of fear around taking him outside, which would have helped him because he needs that stimulation,” Mitchell said. “But we felt like we had to keep him contained, just in case.” It wasn’t until Mitchell’s family was connected with the Sydney Local Health District’s Specialist Intellectual Disability Health Team (SIDHT) that she realized she might not have to live as the sole caregiver for her brother. The team, composed of doctors, nurses, and other health professionals, provides specialized care tailored to the unique needs of people with intellectual disabilities. “Without their support, I have no idea where we would be,” Mitchell said. However, access to such teams remains limited. There are only seven SIDHTs operating across the state’s 15 local health districts. Each team is small and focuses on addressing complex health issues that go beyond standard medical care. Jim Simpson, a senior advocate for the Council for Intellectual Disability (CID), noted that only a small portion of those who could benefit from these teams actually receive them. “Only a small proportion of the people who really could benefit from these teams are able to access them and get that benefit,” he said. The funding model for these teams has also drawn criticism. Rather than being allocated based on population need, funding was initially determined by which local health districts (LHDs) had the organizational capacity to submit successful bids in 2019. This has created disparities in service availability. Simpson argued that the CID is now urging the government to prioritize areas with the greatest demand and expand the number of teams to match the 15 LHDs. “In other words, a team in every local health district,” he said. Health outcomes for people with intellectual disabilities remain alarmingly poor. Compared to the general population, they are more than twice as likely to die from preventable causes and tend to live nearly three decades shorter. They are also overrepresented in the healthcare system, with hospitalization and emergency visit rates double those of the general public. Admissions are longer, costlier, and more frequent. A 2025 evaluation commissioned by NSW Health found that existing SIDHTs have already improved short-term and intermediate patient outcomes. Simpson emphasized that expanding these teams could significantly reduce hospitalizations and lower costs for the entire health system. In response, NSW Health Minister Ryan Park stated that since 2020, the SIDHTs have assessed over 3,700 individuals. His government continues to work closely with the CID on funding matters. While no immediate decisions were announced, the minister expressed commitment to ongoing collaboration. The future of these vital programs will depend on whether the government can balance political priorities with the urgent needs of families and patients alike.