An overview of complex care and the NDIS. Plus, how to choose the right provider if you have complex needs

Complex care is a term that both NDIS providers and participants are likely to have heard before. However, as with much of the technical language and policy speak surrounding the NDIS, we sometimes don’t stop to consider exactly what some of these concepts mean.

In our opinion, it’s vital for any NDIS provider aiming to deliver high quality care to have a firm grasp of the concepts of complex care and complex needs. Likewise, for participants, it’s important to be able to tell when your needs might have become more complex than average, so you can find a provider with the necessary skills to deliver your supports.

In this article, we’ll cover everything you need to know about complex care and NDIS providers. We start with an overview of what complex care is. Then, explore complex care and the NDIS, finishing with how participants with complex needs can choose the right care provider.

If you are an NDIS participant or care provider wanting to learn about the complex care services delivered by SeenCare, please don’t hesitate to contact us.

SeenCare is a specialist registered NDIS provider in Melbourne for participants with high medical needs. We provide supported independent living (SIL) and a variety of in-home health and disability supports. We can also partner with other providers to deliver disability-focused medical care, like in-home nursing and medication management.

What is complex care?

All participants in the NDIS have identified support needs. And for most people, these needs are focused in one or two broad areas.

For example, a participant with paraplegia may need assistance with cleaning and personal care, along with funding for assistive technology. If outside of this the participant is completely independent, their support needs might be considered reasonably straightforward.

However, if that same person also experiences challenges with mental health, is living with medical issues like diabetes and pressure wounds, and has involvement with the justice system, their care needs could be described as complex.

In essence, complex care describes the support needs of people who require support in several different areas at once. This might be due to the severity of a single condition (such as dementia or autism). Or, more commonly, complex care involves needs spanning across different domains (like when someone has disability, mental health and medical needs).

Indicators of Complexity

Bearing in mind that each situation is unique, below are some of the common factors that might indicate that an NDIS participant has complex needs:

• Accommodation challenges: Homelessness and unstable accommodation. Moving from supported accommodation (like SIL or aged care).
• Psychosocial difficulty: Challenges around mental health, substance misuse, social isolation, challenging family dynamics or social vulnerability.
• Medical support needs: Living in the community and requiring support with tasks such as catheter care, PEG feeding, tracheostomy care, medication management, managing chronic conditions (like diabetes), and pressure wounds.
• Challenging behaviours: If a person requires constant 1:1 care, or specialised disability support workers
  to help manage challenging behaviours.
• Mandatory interventions: Recent (or current) history of incarceration, involuntary mental health treatment or involvement with the foster system.

Why is complex care important?

On a broad level, complex care is important for NDIS participants and providers for three reasons:

1. It impacts a lot of participants, but many don’t get the support they need: The NDIS estimates that around 10-15% of all scheme participants will require complex care at some point in time. However, as highlighted in the 2023 NDIS review, of the almost 650,000 participants in the NDIS, only 10,400 (or 1.6%) were in the Complex Needs Pathway (discussed below).
2. People with complex needs often receive disorganised, substandard care: One of the biggest challenges with complex care is people often need input from several different groups of care providers (eg., disability supports, mental health services and medical specialists). This can result in fragmented, poorly coordinated care, where it becomes very difficult for a participant to receive high-quality care that is focused on their goals.
3. Providers can struggle to meet the needs of participants with complex needs: Care providers of all types, whether they be NDIS providers, GPs, educators, mental health services and more, often struggle to meet the needs of people with complex needs. Again, this comes down to the fact that the person needs assistance in several domains at once. Where this multi-layered support is not available, providers can often feel pressure to deliver supports they are not properly qualified or resourced for.

Complex care and the NDIS

Since its implementation, the NDIS has launched two initiatives specifically related to complex care for NDIS participants.

Complex Support Needs Pathway

The Complex Support Needs Pathway was launched by the NDIS in 2018, with the goal to “provide specialised support for participants living with a disability who have many different challenges impacting on their lives.” Participants accepted into this pathway have access to additional resources to improve their care journey, such as specialised NDIA planners and support coordinators. As mentioned earlier, however, only a small percentage of participants with complex needs are accepted into this program.

Exceptionally Complex Support Needs Program

The Exceptionally Complex Support Needs Program (ECSNP) launched in 2019. The initiative was funded by the NDIS to provide resources to support disability providers and mainstream services working with NDIS participants with complex needs. The program concluded in late 2021, but you can still find some resources for working with participants with complex needs on the websites of prior ECSNP providers.

Future Directions for NDIS Complex Care

The 2023 NDIS review recommended the creation of a new ‘Specialist Navigator’ role to support participants with complex needs. However, with no timeframe on when (or if) this recommendation will be implemented, the Complex Needs Support Pathway is currently the only specialised NDIS program available for participants with complex needs.

Fortunately, in recognition of the need for easy-to-access supports for people with complex needs, some NDIS providers have taken the initiative and created their own processes for delivering complex care. For example, at SeenCare, we’ve chosen to focus on delivering integrated healthcare and disability supports to participants with complex needs.

To help participants with complex needs choose a suitable care provider, we’ve outlined 5 key points to look for in a complex care provider below.

Qualities of a Good NDIS Complex Care Provider

If you are a participant with complex care needs, asking potential NDIS providers questions about the following topics will help you figure out if they are well suited to meeting your needs.

Complex Care Experience

It might sound simple, but the best starting point is simply asking an NDIS provider about their experience with complex care. It’s not always necessary for a provider to have managed a situation exactly the same as yours. However, they should be able to explain what their approach is to managing participants with complex needs.

Ability to Work Collaboratively

High-quality complex care is all about collaboration. People with complex needs require support from a variety of professionals who often work across different organisations. Therefore, to achieve positive outcomes, it’s necessary for everyone to work together.

At SeenCare, our team is made up of experienced disability support workers, at-home NDIS nurses and bulk-billing GPs. This integrated model means our entire team can work in a coordinated way to manage a participant’s care. Plus, because our staff have experience across a variety of sectors, we can effectively collaborate with external care providers and organisations our clients might be involved with.

Relevant Expertise

Most participants with complex needs require specialised care in at least one area (eg., medical, mental health, mobility). Therefore, in addition to general experience in delivering disability care, you should also ensure the provider can meet any of your more specialised needs.

With extensive experience across both the disability and healthcare sectors, the team at SeenCare is well placed to support participants with high medical needs. This means even if participants require assistance with medical tasks, such as wound care, peg and swallowing assistance, medication management, overnight support and chronic disease care, we can still support them to live in the community.

Commitment to Person-Centred Care

A complaint from some participants with complex needs is that they become defined more by their collection of care needs than as a person living a unique experience. If you want to assess a potential NDIS provider’s commitment to person-centred care, try asking them about the flexibility and autonomy they allow. For example, you might ask whether therapy or nursing visits can be scheduled at a time that suits you. Or, you could query how a provider can assist you to achieve some of your quality of life goals, like community participation, while also meeting your more high-intensity care needs.

Multi-Disciplinary Team

Finally, NDIS providers with a team of professionals from a variety of backgrounds often make it easier to receive more coordinated complex care. This shouldn’t discourage you from seeking out providers for single services. But, if you need assistance from a number of professionals to live independently, looking for opportunities to group some together within the same organisation can make managing your care a little easier.

Final Thoughts

Improving how care is delivered to NDIS participants with complex needs is likely to be in the spotlight for the foreseeable future.

While a dedicated solution may be rolled out by the NDIS in the future, it seems just as likely that providing complex care will formally be made part of the core business of NDIS providers (as it effectively is today).

For NDIS providers, the best path forward is likely to embrace working with participants with complex care needs, by making appropriate adjustments to policies, procedures and the skill mix of care teams. For participants with complex care needs, it’s essential to evaluate the experience, capabilities and attitudes of any provider you are considering working with, to ensure they are well placed to deliver the care you need.

At SeenCare, we understand the challenges people living with co-occurring disability and medical needs face in accessing high-quality care in the community. To overcome these barriers, we assembled a team of experienced disability support workers, home nurses and bulk-billing GPs.

To find out more about our unique complex care services for NDIS participants, you can view our full range of services on the website. Alternatively, contact us and one of our friendly team members will gladly assist.