Crucial Specialist Health Teams Transform Lives, But Many NDIS Families Miss Out

When Rose Mitchell was just 10 years old, she felt a profound shift, taking on the role of a parent for her newborn brother, Daniel Rata. For decades, they were inseparable, a bond that continues to be central to Rose’s life.

Yet, as Daniel grew, Rose found herself navigating a difficult balance. She spoke of the “guilt” she carried, trying to build her own independent life while also feeling the deep responsibility of being her brother’s primary caretaker.

Navigating a Complex System for Intellectual Disability Support

For the approximately 117,000 individuals with an intellectual disability in NSW, and their families and carers, finding and accessing appropriate support can be incredibly challenging. Dr. Alexis Berry, Vice President of the Australian Association of Developmental Disability Medicine, describes the system as “exceptionally hard” to navigate.

Before the National Disability Insurance Scheme (NDIS) was introduced, many individuals with intellectual disabilities accessed support through local government services. These often acted as a “one-stop shop” with an assigned case manager, simplifying the process.

However, the NDIS brought a more “individualistic approach.” While this aims to empower participants, it often means individuals and families must navigate the system themselves, without a dedicated guide.

When Support Was Hard to Find: Daniel’s Story

As Daniel grew, his needs became more complex. He required frequent hospitalisation due to seizures, and his frustrated, violent meltdowns grew increasingly difficult for his family to manage. Rose explained the constant fear: “We felt like we had to control his environment at all times, just in case, because we just didn’t have the answers.”

The family worried about taking Daniel outside, despite knowing he needed the stimulation. His meltdowns created a sense of isolation and immense stress for Rose and her family in Sydney’s inner-west.

A Turning Point: Specialist Health Teams

A significant breakthrough came when Daniel’s family connected with the Sydney Local Health District’s Specialist Intellectual Disability Health Team (SIDHT). This team brings together doctors, nurses, and other health professionals to address the often complex health needs of people with intellectual disabilities.

Rose shared that without the SIDHT’s support, she has “no idea where we would be.” For her, it was the moment she realised she wouldn’t have to carry the sole burden of her brother’s care for her entire life.

In Daniel’s case, the clinicians within the SIDHT identified that his challenging behaviours were linked to anxiety. Once he was put on new medication, Rose described a profound change for the whole family.

“It just completely levelled out the frequency of the meltdowns,” she said. This allowed Daniel to reintegrate into social groups, returning to beloved activities like playing basketball at local courts for hours, socialising and making friends. “I could go and chill on the sidelines, and he would just be feeding his soul,” Rose added.

The Gap in Essential Services: Uneven Access to SIDHTs

Despite the clear benefits, access to these life-changing SIDHTs remains a postcode lottery. Currently, there are only seven such teams across NSW’s 15 Local Health Districts (LHDs). This means that many people with intellectual disabilities and their families simply cannot access this vital support.

According to advocates, the initial funding for these teams in 2019 was not based on community need. Instead, it depended on which LHDs had the infrastructure and organisation to successfully bid for funding.

Jim Simpson, a senior advocate for the Council for Intellectual Disability (CID), stated that this funding inequity means only a “small proportion” of those who could benefit from these teams are able to access them. The CID is now urging the government to boost services where they are most needed and expand to 15 teams – one for every Local Health District.

Addressing Critical Health Disparities

The urgency for expanded services is stark when looking at health outcomes for people with intellectual disabilities. These individuals face “unconscionable” disparities, as highlighted by Jim Simpson.

They are more than twice as likely to die from potentially avoidable causes and die an average of 27 years earlier than the general population. Their rates of hospitalisation and emergency presentations are also twice as high, leading to longer and more expensive hospital admissions.

A 2025 evaluation commissioned by NSW Health confirmed that existing SIDHTs significantly improved short-term and intermediate outcomes for their clients. Expanding these teams, Simpson noted, has the potential to save the health system money in the long run through preventative care and reduced hospitalisations.

NSW Health Minister Ryan Park acknowledged the importance of these teams, stating that SIDHTs have assessed over 3700 people since 2020. He confirmed that the government invests over $6 million annually into the NSW Intellectual Disability Health Service and would continue to engage closely with the CID on funding matters.

What This Means for Participants, Families, and Providers

The story of Daniel and Rose Mitchell clearly shows the profound impact that dedicated, specialist health support can have on the lives of individuals with intellectual disabilities and their families. While the NDIS offers individual plans, navigating complex health needs often requires specialist clinical teams that are currently too few and far between.

For NDIS participants and their families, it’s important to be aware of the Specialist Intellectual Disability Health Teams and advocate for their availability in your Local Health District. If you are struggling to find appropriate health support, connecting with advocacy organisations like the Council for Intellectual Disability (CID) can provide guidance and help strengthen the call for expanded services.

For disability service providers, understanding the critical role of these specialist health teams can help you better refer and support your clients, or even advocate for greater investment in your region. The goal is to ensure that everyone who needs specialist health support for intellectual disability can access it, leading to better health outcomes and a higher quality of life.

Hazel Chen

I work in marketing and communications for NDISLocal, helping connect NDIS participants, families, and providers with clear, useful information about the sector. I'm passionate about making the NDIS easier to understand and navigate, and about giving disability service providers a platform to reach the people who need them. If you'd like to know more about anything covered in this post, or you're a provider interested in being featured, feel free to get in touch.