Disability Representative and Carers Organisation (DRCO) Forum summary – 20 November 2025

Key themes and insights

NDIA Update

• Key themes:
  • Thriving Kids
    • The Thriving Kids Advisory Group has been established by the Department of Health, Disability and Ageing (DHDA). Reviews, consultations, and a parliamentary inquiry are informing the program’s design, with feedback highlighting the need for universal coverage, cultural safety, and support for remote communities.
    • The goal is to build out the system of Thriving Kids supports from the middle of 2026, with current NDIS eligibility criteria for children under 9 to continue until 2027.
  • New approach to planning
    • Workshops with participants are being held to test the support needs assessment experience.
    • New framework plans will rollout gradually from mid-2026. It is expected to take 4-5 years for all participants to transition.
  • The Short-Term Respite (STR) Operational Guideline has been updated. The Agency understands ‘respite’ is a polarising term and remains open to feedback.
  • The Agency has responded to feedback about funding periods and adjusted the policy and guidelines to allow for funding periods in plans with a total budget of less than $15,000 to be set at 6-month periods, and frontloading of funds at the start of a plan for supports like assistive technology or establishment of a new support coordinator.
• Key insights:
  • Members expressed concern that diversity of disability lived experience has not been fully reflected during consultations for Thriving kids.
  • Concern was raised over the composition of early childhood experts on the Thriving Kids Advisory Group, and that experts in whole of life outcomes for people with disability are not represented.
  • The rollout and testing of support needs assessments should consider how carers supporting participants are involved during this process.
  • Members noted there has been progress regarding guidance for funding periods but expressed the need for a broader uplift in staff knowledge across the Agency.
  • Members want to know what training staff receive in relation to child safety obligations after hearing concerning feedback from parents that they (parents) have been told they will be referred to child protective services after expressing they’re struggling with their parenting role to planners during plan reassessment meetings.

Designing a new pathway for children

• Key themes:
  • The Agency has engaged parents of children and young people and worked closely with the Children’s Expert Advisory Group to gather insights into what works well in the current process.
  • Early design concepts have focused on applying to the NDIS, the assessment process, creating and using your plan, and leaving the Scheme for children who might exit after receiving early intervention supports.
  • This has included:
    • Pathways for children who are more likely to have permanent disability and/or have significantly reduced functional capacity.
    • Maintaining existing specialised pathways such as the children’s hearing access and planning process.
    • Considering NDIS supports a family might access.
    • Designing ways to ensure greater consistency of best practice evidence-based supports.
  • The Agency has also considered how parents, families and children will get support from other systems and services outside the NDIS, including mainstream health and early childhood services, Thriving Kids, and future navigation services.
  • The Department of Health, Disability and Ageing and State and Territory Governments are still designing Thriving Kids. The NDIA anticipates the program will provide early intervention supports will help to reduce the need for ongoing disability support for some children.
  • The Agency is working with the Department to ensure families can navigate all systems easily, with a ‘no wrong door’ approach, and information sharing to reduce families having to re-tell their story.
• Key insights:
  • Members are concerned there is a high emphasis on assessing substantially reduced functional capacity for children who have a diagnosis, and keen to see early intervention supports available before functional impacts are apparent.
  • Members want clarity on when in the pathway evidence of substantially reduced functional capacity will be required to access services and supports, and the referral pathways for children when moving between systems.
  • There is concern children with complex needs that do not meet the substantially reduced functional capacity criteria will not be able to access necessary disability services and supports.
  • Members are keen to understand how the early intervention pathway will support children who are not diagnosed until they are past the age of 9.

Department of Health, Disability and Ageing update

• Key themes:
  • The Department is still in the early days of designing Thriving Kids, and confirmed concerns around the inclusion of lived experience and the need for deeper engagement had been heard.
  • The Department is working closely with the NDIA to ensure there is sufficient meaningful information on New Framework Planning for the disability community.
  • Disability Ministers met recently to discuss broader health and disability reforms and noted the work happening in the development of New Framework Planning.
  • Public consultation on the Commonwealth's individual disability advocacy program is open until 16 January 2026. The Department is looking to establish a new program to replace the National Disability Advocacy Program, Indigenous community advocacy pilot the disability advocacy support helpline and the National Centre for Disability Advocacy.
• Key insights:
  • Members are keen to understand how information is shared between the Department and the Agency.
  • Members expressed concern that information regarding consultation undertaken by the Department is not adequately shared with the Agency.

Integrity Team Update

• Key themes:
  • The Fraud Fusion Taskforce, which has 24 Commonwealth agencies is now working with other State and Territory agencies in a number of operations that involve a significant level of wrongdoing.
  • Operations targeted providers that have been working across multiple programs, such as education and NDIS.
  • Some of these operations have reached resolution stages, with State and Federal Police executing search warrants against providers involved in claiming large amounts of money from government schemes, including the NDIS.
  • As part of the crack down on fraud systems uplift, the Agency has improved identity requirements to eliminate fraudulent providers coming into the Scheme via digital channels. With digital identity checks now mandatory for people using online channels.
  • The Agency has also begun trials for e-invoicing and currently building other systems to detect problematic claiming.
• Key insights:
  • Members sought and gained reassurance that revoking participants access to the Scheme is not used as punishment when integrity concerns are identified, and that cases are assessed individually to determine if eligibility reassessment is needed.
  • Members highlighted that participants with high support needs must continue to receive NDIS supports when the NDIA is investigating integrity concerns.
  • Members expressed concerns about the impact of integrity activity on services for one arrangements for participants with complex support needs and high value NDIS plans.
  • Members raised they are hearing from plan managers that participants are ‘plan manager shopping’ and saying they will go to another plan manager if they refuse to approve non-compliant claims.

DRCO Forum 2025 Workplan

• Key themes:
  • The DRCO secretariat have been working with the Disability Representative (DRO) Organisations National Coordination Secretary to define the role of DRO’s and DRCO’s to ensure work happening across both is not doubling up.
  • The Secretariat noted the DRCO Forum has been a key factor in maturing sector capacity and ways of engaging.
  • The DRCO membership working group received 3 applications for DRCO membership. They have been evaluated under the new membership criteria with further evaluation to continue into 2026.
  • The working group used the recent applications to test the membership criteria and identified areas where it needs further refining.
  • The DRCO S10/S33 evaluation advisory group concludes in early 2026. The group has helped shape tools and outputs for the participant experience and frontline worker surveys, evaluation reports, and broader data trends.
  • The Accessible Communications working group provided input on the NDIS Engage website, staff communication products, and easy-read materials, and they are currently developing a checklist to support NDIS staff with producing accessible content.
  • The Employment working group has provided input to conversation guides. The guides have been broken down into life stages:
    • People still at school seeking part time employment.
    • Young people transitioning from school to work, or education to training.
    • Support at work, what an individual might need to do to maintain employment.
• Key insights:
  • Members requested a DRCO children’s working group to be established so they can bring issues faced by children to the table.
  • Members are keen to understand who is being engaged in the DRCO working groups and what voices are not included.
  • Members would like to see work plans for DRCO working groups, to see where there is a need for consultation to broader cohorts.
  • Members highlighted the need for further discussions on the forum ways of working and ongoing operating model.

Supported Independent Living (SIL) Quality Supports Pilot

• Key themes:
  • The SIL pilot is looking to develop a definition of quality of SIL service delivery. It is considering what quality SIL services and supports should include, how much they should cost and good practices across registered and unregistered providers, across multiple locations and jurisdictions.
  • The pilot is seeking to learn more about provider related costs associated with providing quality services for participants who have complex needs to inform NDIS pricing, as well as other actions the Agency can take as market steward.
  • All providers participating in the pilot are registered, and some of those providers also provide short term respite supports.
• Key insights:
  • Members asked how different projects relating to quality and practice standards are connected across different government entities, such as the NDIA and the NDIS Quality and Safeguards Commission.
  • Members are keen to understand how people living in shared, supported settings are being included in the pilot.
  • Concern was raised over the blending of the care economy, that it cannot come at the expense of the positive gains that have been made in the disability sector.

Data equity and targeted approaches (DRCO-led agenda item)

• Key themes:
  • DRCO’s raised concerns that dual disabilities are not properly recorded in NDIA systems, and current data fails to reflect the complexity of dual sensory impairments, causing negative outcomes for participants.
  • DRCO’s highlighted there is fear and concern in the community, that if participants do not have their disabilities properly recorded in the Agency’s systems, decisions could lead to negative planning outcomes.
  • DRCO’s noted there is a need for centralised ways of providing feedback on gaps in Agency data and information.
  • DRCO’s further discussed that trauma-informed planning requires accessible formats like easy-read plans and access to relevant data for engagement.
• Key Insights:
  • The Agency is looking at what the NDIS plan looks like under New Framework Planning, and how to get that right from an easy-read perspective.
  • The Agency noted more work is needed to define what ‘good’ looks like now, identify how ‘good’ should look in the future, and complete a gap analysis.
  • The Agency highlighted while there is some good data, the legacy from transitioning from state systems to the NDIS has resulted in some low quality data.

Attendees

Australian Federation of Disability Organisations, Autistic Self Advocacy Network of Australia and New Zealand, Blind Citizens Australia, Carers Australia, Children and Young People with Disability Australia, Community Mental Health Australia, Deaf Australia, Deafblind Australia, Disability Advocacy Network Australia, Down Syndrome Australia, Every Australian Counts, Inclusion Australia, JFA Purple Orange, Mental Health Australia, National Ethnic Disability Alliance, National Mental Health Consumer and Carer Forum, People with Disability Australia, Physical Disability Australia, ReImagine Australia, Women with Disabilities Australia, Young People in Nursing Homes National Alliance, Australian Autism Alliance, Deafness Forum Australia, Department of Health, Disability and Ageing, Reform Advisory Committee Co-Chairs. 

Apologies: A4 Autism Aspergers Advocacy Australia, Brain Injury Australia