The Neurodegenerative Palliative Care and Rare Diseases Advisory Group (NPRAG) met online on Wednesday, 4 February 2026.
Focus of the meeting
The focus of the February meeting was:
- Remote Service Delivery Model
- Pricing arrangements
- New Framework Planning.
Remote Services Delivery Model
The National Disability Insurance Agency (NDIA) created the Remote Service Delivery Model in March 2025. This was in response to the NDIS Review and Disability Royal Commission which recommended improvements to remote service delivery.
The key concepts of the model include:
- Teams assigned to specific areas so they can build location relationships.
- The NDIA will work with other agencies when traveling to communities.
- Remote teams will visit communities at least twice a year.
The NDIA will deliver the model in partnership with:
- Remote Community Connectors
- Remote Early Childhood Programs
- Alternative Commissioning Pilot programs.
Member feedback included:
- The need to engage with communities and link services, noting this is often difficult in remote areas.
- The view that a successful model in remote communities will improve participant experiences across Australia over time.
- It is important to use lessons learned from other regions.
- A suggestion that the NDIA connect with peak body organisations to support service delivery and identify training needs.
Pricing arrangements
The NDIA has a three-year work plan available on the Pricing updates page.
The work plan includes detailed reviews on different supports, starting with therapy.
The NDIA will continue to work with participants, families, providers and the wider disability community.
The NDIA closed consultation for annual pricing review in February 2026. This consultation was successful, with over 3500 submissions and survey responses received. This year the NDIA ran an open consultation process and encouraged participants, their families and carers to have their say.
Outcomes of the annual pricing review will be published over the coming months.
The NDIA will continue to manage pricing arrangements until the government decides whether to transfer the responsibility to an independent body.
Members feedback included:
- Strong concern about the lack of providers, especially in rural and remote areas.
- Concerns about travel funding, including:
- The essential need for travel in rural and remote areas.
- Providers often do not offer because travel because they may lose money.
- The need for specialist practitioners to travel to provide certain services.
- The view that therapy supports often work best in the home where complex conditions exist.
New Framework Planning
New framework plans will include:
- A flexible budget where participants can generally choose supports.
- Stated supports where funding must be used on a specific item or support.
The NDIS Act allows the NDIA to vary a plan when small changes are needed without creating a new plan. The NDIS Act requires a reassessment when a participant needs a new plan and a new support needs assessment.
In 2024, the NDIS Act introduced a new type of variation. This lets the NDIA add funding when needed to prevent a risk to a participant’s life, health or safety.
The NDIA asked members for examples of when a participant may need additional funding in their plan.
Members feedback included:
- Withdrawal of support.
- Carer illness.
- Increasing needs caused by progressive conditions.
- Poor hospital discharge planning and limited training on new support needs.
- The need for fast access to crisis and emergency funding to prevent poor outcomes.
- Understanding that people with degenerative conditions have different rates of change to their condition.
Next meeting
The next Neurodegenerative Palliative Care and Rare Diseases Advisory Group meeting is scheduled for Wednesday, 25 March 2026.