Choosing an NDIS Provider for Complex Care Needs: Why Generalist Isn't Always Good Enough

The majority of the NDIS information is geared towards the middle of the market, that is people with moderate support needs, goals that could be mainstream and supports that are generalist. That's good for most people. It doesn't work as well for the minority, where people's care needs are actually complicated and where the wrong provider doesn't just cause a week of frustration, it causes them to be admitted to hospital, regress to being a child again, or it is a true safety incident.

If you are in that minority or you are a family member or coordinator assisting someone who is in that minority, then this post is for you. The criteria for making the decision are different, the questions are different, and the stakes are higher.

What "Complex Care" Actually Means in NDIS Terms

The concept of complex care is not a single thing. The umbrella encompasses many situations that may have high needs:

1. Full physical care, hoist transfers, manual handling, pressure care, continence care, high needs personal care.
2. Ventilation, respiratory support and tracheostomy.
3. Gastrostomy (PEG), nose (NG) or jejunostomy (jejunostomy).
4. Caring for a catheter and/or stoma.
5. Appropriate treatment of diabetes, including insulin use.
6. Medication protocols for the treatment of epilepsy.
7. Complex and high levels of behaviour support, including NDIS Commission regulated restrictive practices.
8. Acquired brain injury or progressive neurological illnesses requiring coordinated multidisciplinary treatment.
9. High risk mental health conditions.
10. End-of-life or palliative supports as part of NDIS funding.

All of these have particular sets of competency requirements. A good employee in one job may be bad in another. Not a yes or no question, it's a yes or no question, but with a caveat. Not only a yes or no question, but with workers who have this competency, and a provider of complex care who has this competency.

Why Generalist Providers Often Fall Short for Complex Care

For personal care, community access and domestic assistance, the agency model (workers appointed from a general pool of workers, supports delivered based on generic competency standards) is effective. In most cases, it is not adequate to fully meet complex needs because:

Not everyone is equally good at being a specialist. A general-pool agency may have one employee who is skilled in tracheostomy care and be called on to work with fifty employees. When that worker's shift is rostered, it's sent to that one worker, until he/she is on leave, sick, or has completed his/her shift. Structurally difficult continuity.

Generalist training does not include specialist skills. Cert III in Individual Support provides a worker with a foundation in personal care, but not in how to operate a ventilator or administer rescue medications. Training is a specific skill that is taught by the agency (a rarity with high skills) or by the worker.

Participant preferences are not a consideration in a risk management context. In complex care situations, agencies tend to default to risk-averse practices such as added supervision, sign-offs, escalation pathways, practices that "keep the agency safe, but the participant from it. Appropriate at times, too much at times.

Care plans turn into "paper plans". In the agency environment, complex care plans frequently turn into long documents (10+ pages) that are never read, and sign-offs delay real decisions. Plans are not for care, they're for compliance.

What Good Complex Care Provision Looks Like

Complex care providers and arrangements have some characteristics:

Specialist clinical oversight. Registered nurse, allied health professional or behavioural specialist to answer clinical queries, escalate and continue competency development of support workers.

A dependable, steady staff. 3-5 workers with a good knowledge of the participant rotate in a predictable manner and are each trained on the specific care needs of the participant. Not 20 people.

Lived Care Plans, documented. Care plans that are in use by workers, regularly reviewed as the participant's needs change, and have an escalation plan and PRN (as needed) protocols.

Close contact with treating health care providers. The provider liaises with GPs, specialists, hospital teams, allied health. Care doesn't fragment between disability and health systems.

Workers' competency-testing for specific tasks. Competencies reviewed annually or every six months for high risk students. Tracheostomy care is not tested at induction but is checked regularly.

On-demand clinical and/or coordination assistance. If there's a problem at 2am, someone who knows the participant is available.

Models That Work for Complex Care

There are three structural models that tend to provide complex care well, and each have their own set of trade-offs:

1. Specialist registered providers. Some registered providers only have complex disability, acquired brain injury, ventilator dependent care as a focus group. The organization of their workforce, training and clinical infrastructure revolves around it. Typically the best solution for those who have complex needs and have limited ability to access services on their own. High cost, but reasoned by the facilities needed.

2. Specialist independent workers, with specialist skills, assisted by a clinical lead. Growing in prevalence: participant forms a small group of independent workers that have the specific skills required, with a clinical nurse consultant/ allied health lead that oversees, teaches and escalates. Typically set up via self-management, or having a coordinating layer.

This model maintains the continuity and choice characteristics of independent practitioners and also gives clinical infrastructure that the complex care needs. It's a model that can be facilitated in platforms such as Support Network, where care workers can post their profile with the skills they are qualified to provide, and participants can search for the specific skills they are looking for.

3. Hybrid registered and independent. For the most clinically complex parts (overnight care with a respirator, for example), independent workers in the daytime for personal care and community access, and registered specialist provider for these aspects. Merges the accountability and oversight of registered specialist services with the accessibility, flexibility and continuity of independent practitioners.

The Questions to Ask a Provider About Complex Care

If a provider is being thought of for a complex care need, the following questions are not part of the regular provider screening process:

1. How many participants are you currently helping with [need that I have]? Specific numbers, not guarantees. The provider with one participant with a tracheostomy, and one with epilepsy, is in a different position than the provider who supports twenty participants with a tracheostomy.

2. Describe an incident that was complex your team worked through in the past year (what happened and what happened as a result)? Checks their integrity (do they accept that things go wrong) and their culture of learning (do they repeat & repeat as a result of what they learn).

3. What clinical supervision is there, and at what intervals? Weekly clinical review? Monthly? On-call only? The frequency is an indication of their commitment to complex care.

4. What procedures are in place for the training of workers in [specific task] and for the assessment of competency? Should be documented, established and have sign off criteria. While this term is not specific to complex tasks, it is not enough to answer in a vague way with the term "experience".

5. What is the escalation escalator if something unexpected happens? Should be specific, names, numbers and response times.

6. "How do you communicate with your treating clinicians?" A provider outside of your health care system is disrupting your health care. Good complex care providers actively coordinate.

7. "Do you have two other participants that you currently support with similar needs? The best reference. Most providers should be able to find willing participants, with appropriate consent.

The Role of Behaviour Support

Separate mention because it's a separate regulatory area within complex care. Behaviour support, particularly involving any restrictive practices, is one of the most heavily regulated parts of the NDIS. Anyone employing restrictive practices must:

• Be supported by the NDIS.
• Have authorization through a state mechanism
• Have a positive behaviour support plan developed by a specialist NDIS Behaviour Support Practitioner
• Report use of restrictive practice to the Commission

If you are involved in supporting someone who does have any form of restrictive practice, then the regulatory framework will not be open to negotiation. This is not suitable for unregistered providers.

Funding Considerations Specific to Complex Care

More complex care is more expensive, with the following pricing set: Level 2 personal care pricing for higher complexity needs, and specialist nursing supports have their own line items in the NDIS Pricing Arrangements. Important to ensure:

• Your plan is at an appropriate rate to cover the level of complexity you actually need.
• Access to specialist supports (clinical nurse consultants, behaviour support practitioners) as appropriate
• Support hours are not used for funding equipment and consumables

If the plan has been previously reviewed at generalist level and your needs are actually complex, this is a plan reassessment conversation. Record the complexity, obtain clinical letters of support and seek a review via NDIA. Plans may be reviewed during the cycle if needed due to changes in circumstances.

One Thing That Matters More Than Provider Choice

If the care is very complex, then the consistency and competency of individual workers is often more important than the name of the provider on the contract. The average systems with excellent, stable workers are going to provide better quality of complex care than to a prestigious provider with high worker turnover.

This is one of the ways why the independent model of working can often produce more personalised care than an agency framework can provide, particularly for complex care, when you can select the workers you want, have a long term relationship with them and invest in their competency development for your specific needs.

The Bottom Line

It is no generalist problem that the provision of complex care is inadequate. Complex needs require a specific provider with competencies, clinical infrastructure, and an effective model of staffing for continuity of care provision. Personal care, community access, and everyday supports can be provided by a generalist provider, but if it involves clinical risk, specialist behavioural supports, or true high acuity care, the question becomes whether the provider will have depth of expertise and the right operational model.

If you are seeking independent workers with certain complex care skills, you can search by skills and experience in Support Network's Directory, Workers list certain competencies such as mental health, manual handling, complex behaviour support, tracheostomy care and more, and you can filter by suburb and availability.