Proposed changes to the participant pathway explained

Recommendation 3 of the NDIS Review’s Final Report, along with its 9 action points, proposes a comprehensive re-design of the entire NDIS participant pathway. So, you know, just the small stuff. The ‘participant pathway’ is the term used to describe a person’s journey through the NDIS - from learning about the Scheme, to applying, planning, using their plan, and reassessment. A journey that, based on the Review’s findings, has at times been less a ‘pathway’ and more an uphill, off-track hike leading to an underwhelming view.

Over the coming weeks, we’ll be bringing you some more in-depth analysis of key recommendations. For a broader overview of the 10-year NDIS Review Final Report, check out our article from December.

An important caveat before we get started: these are only recommendations. We wait with bated breath for the government’s response, which we should get in the coming months. But even if a recommendation is accepted, that would only be the beginning, as a big part of the puzzle will be figuring out how to operationalise changes and over what timeline.

Now the caveats have been covered, let’s dig in to Recommendation 3: ‘Provide a fairer and more consistent participant pathway.’ We’ll be focusing on the general pathway today, not early intervention.

The Problems

The problems with the current participant experience of the NDIS have been so thoroughly documented, that the Review’s findings should not come as a huge surprise. We don’t need to spend too much time covering this well-trodden territory, but here are the headline findings:

Reasonable and necessary is not clearly defined.
The eligibility and planning processes are too adversarial. This has led to a breakdown of trust.
People feel they need to present the worst picture of their life to get supports.
Eligibility and planning focus on diagnosis, not support needs.
There is an inequality between those who can navigate the Scheme to get the best outcomes, and those who can’t.
It can be expensive to get all the reports the NDIS requires.
The planning process doesn’t adequately consider a person’s long-term support needs.
The process is confusing, complicated and at times unfair.
These problems are exacerbated for First Nations and Culturally and Linguistically Diverse (CALD) people.

The solutions

The NDIS Review has recommended quite a comprehensive re-vamp of every stage of the participant pathway.

Pre-access

Under the proposed model, people hoping to explore disability supports would be connected to a local Navigator. Navigators are a new role recommended by the Review, to eventually replace Support Coordinators, Psychosocial Recovery Coaches, Plan Managers and Local Area Coordinators. Mainstream services, such as schools or hospitals, could refer people with a disability to a local Navigator.

The Navigator would help the person to connect with mainstream and foundational disability supports. If required, the Navigator can also support them to apply for the NDIS.

Access and eligibility

The Review has recommended several changes to the NDIS eligibility process. Arguably the biggest, is the suggestion that a person’s eligibility be based on their functional capacity, and only looking at medical diagnosis as a secondary consideration. Currently, the NDIA relies heavily on access lists, which give people with disabilities on the lists streamlined access into the Scheme. Everyone else needs to demonstrate, for each of the disabilities they are seeking access for, how it impacts their functional capacity, as well as establishing that the disability is permanent. This becomes tricky if, for example, a person has multiple disabilities that cause fatigue, as it is not always easy to determine how much fatigue is caused by Condition A v Condition B.

The Review argues that focusing on functional capacity not medical diagnosis would allow the NDIS to consider the cumulative impact of multiple disabilities on a person’s life, or that the same diagnosis can impact people in different ways. In keeping with this, the Review has also suggested removing the streamlined access lists.

However, figuring out how to measure functional capacity might end up being the more-than-Medicare-billion dollar question. The Report says the NDIA would need to develop a definition of a ‘substantially reduced functional capacity’ that is clear to applicants, leads to consistent decision making and is linked to results on assessments. The assessment tools accepted by the NDIA would need to measure functional capacity over a range of domains (like learning, mobility, social-emotional, etc.) and consider how capacity might fluctuate over time. The Review recommends the NDIA test assessment tools on a range of disability cohorts, and where appropriate assessments tools don’t exist, they should be developed. The NDIA would also need to work out how to compare results from different assessment tools.

What they’re describing is such a huge and complex task that even writing it all out is rather overwhelming, let alone implementing it. So, you see why accepting a recommendation would only be the first step?

The Review recommends that eligibility assessments be undertaken by the person’s treating professionals and paid for by the NDIS.

The Review also suggests the Access Request Form be updated to:

Be a dynamic, online form - with verbal and printed options available if required.
Provide real-time guidance on what information is needed.
Allow evidence from the applicant as the expert in their own life, alongside treating professionals.

Once a person has been accepted into the Scheme, the Review says their eligibility should not be reassessed unless there is a strong need.

Needs assessment aka the artist formerly known as planning

Once a person has received the letter in the mail welcoming them into the NDIS, the Review recommends they undergo a needs assessment to determine their level of funding. The needs assessor would be an employee of the NDIA and the funding decision maker. The Review suggests they have qualifications in allied health, social work, youth work, or have other appropriate disability experience. In complex circumstances, a multi-disciplinary team might be involved.

The Review recommends the needs assessment:

Take as much time as needed, including going over multiple sessions if required.
Rather than focusing on diagnosis, look at the person’s support needs and what would allow them to live an ‘inclusive life.’
Rely on strength-based and self-reporting techniques.
If assessments tools might assist the process, these should be valid, transparent, accepted by people with disability and appropriate to the circumstances.
Take a long-term, forward looking approach.
Review information from treating professionals, the participant, and their families.
Meet with key people in the person’s life, if appropriate.
Collect only necessary information.
Assess the risks in a person’s life.

Under the proposal, the needs assessor would then set a budget. The budget would determine reasonable and necessary at a whole of plan level, rather than the current process, where the reasonable and necessary test is applied to each support.

The Report talks about getting planning ‘right the first time,’ so there is less need for frequent plan reassessment. They say that where appropriate, plans should be multi-year and reassessment should align with key life transition points.

Using the plan

The Review recommends that people be given a lot more flexibility over how they use their budget.

Under the proposed model, plans would be divided into three categories:

Flexible budget.
Home and living supports, including Specialist Disability Accommodation, home modification, 24/7 living supports and Medium Term Accommodation.
Stated supports for assistive technology, equipment, or other one-off capital costs.

People would be able to use their flexible budget on home and living supports, but not the other way around.

All participants would have access to a Navigator to support them to develop a ‘plan of action.’ Navigators would also check-in with the participant throughout the lifetime of the plan.

The Review recommends that the NDIA takes a more ‘trust-based approach’ to how participants use their budget, with compliance taking the form of guidance and support. Basically, the NDIA would need to run on the assumption that most people aren’t using their funds to buy yachts. If minor issues do arise, then Navigators can increase their support. As a last resort, the NDIA can put more controls on a person’s budget, but this should be done through a transparent process.

The Review has also recommended that the NDIS rules provide a better definition of an ‘ordinary living expense.’ This would give participants a clearer sense of what they can spend their NDIS funds on, and what needs to come out of their own pocket.

Transition

Government employees reading the Review’s Final Reports are probably getting a stress headache think about their growing to-do list. It’s obvious that none of this can happen overnight (if it happens at all). According to the Report, these changes to the participant pathway can only be achieved if there is a serious investment in uplifting the capabilities of the NDIA.

The Review recommended a 5-year transition period to implement all the recommendations in the Report. But they did flag some things for immediate action, like foundational supports, updating access guidance, and workforce measures.

The Review has also said that all changes must be designed, tested, and implemented with people with disability. And emphasised the need for a smooth transition for existing participants.