Disability Representative and Carers Organisation (DRCO) Forum summary – 9 December 2024

Key Themes and Insights

1. Current issues

• Key Themes: NDIA eligibility reassessment processes.
• Key Insights:
  • Current eligibility reassessment communications are problematic for people with permanent disability, for example Down Syndrome, and are causing significant trauma for participants and families.
  • Concern the Agency is sending participants eligibility reassessment letters when their case is sitting before the Administrative Review Tribunal.
  • Concern participants are not receiving the initial communication asking for evidence as part of their eligibility reassessment. The Agency needs a process for confirming the participant received the initial letter.
  • Concern the Agency is calling participants about eligibility reassessments without notice. Participants are not having the opportunity to organise support for these phone conversations.

2. NDIS legislative reform – compliance powers and penalties for providers, led by NDIS Quality and Safeguards Commission

• Key Themes:
  • NDIS Quality and Safeguards Commission is making changes to regulation to improve the quality and safety of support being delivered to NDIS participants.
  • The proposed changes are across 3 areas:
    • Penalty Framework and Statutory Requirements: To ensure fit-for-purpose penalties and offences framework that provides sufficient deterrence.
    • Safeguarding: Adding to the categories of people who a banning order can be imposed against, to ensure unsuitable persons can be excluded from the NDIS.
    • Information Gathering: Strengthening powers to obtain relevant information from NDIS providers and other persons within appropriate timeframes.
    • Further information on the proposed changes is available on the NDIS Commission website. 
• Key Insights: 
  • The NDIS Commission needs to invest in education for the disability community to support people to understand their rights and service provider obligations.
  • Need to ensure whistleblower protections are in place. Concern participants and service provider staff are not protected from retributory acts if and when participants, or staff, complain to the NDIS Commission about provider behaviour.
  • Propose additional funding or support be available to whistleblowers who make a complaint to ensure they can continue to access services from other providers or be supported if they can no longer work for their employer due to making a complaint.
  • Strong support for strengthening the penalty framework and statutory requirements to reinforce provider duty of care for people with disabilities. 
  • Recommend investment in community legal centres and legal aid to support participants to understand their rights.
  • Concern shorter timeframes for information gathering may be problematic for  participants and nominees who self manage or have a Service For One, especially if experiencing a traumatic event.

3. NDIS legislative reform – timeline for rule development led by Department of Social Services (DSS)

• Key Themes:
  • In February and March 2025, DSS will engage the disability community, participants and state and territory governments to support the design and development of the new NDIS rules.
  • DSS is establishing a new NDIS rules working group including all 11 DSS Disability Representative Organisations. 
  • DSS will engage though existing engagement channels including NDIA-led co-design working groups, participant reference groups and other engagement forums. 
  • Public consultation to take place through webinars. Updated information is to be regularly available on the DSS website.
  • DSS to work with state and territory governments and disability representative organisations to prepare communication materials ahead of consultation.
• Key Insights:
  • Significant concern about the timeframes for the consultation on the design and development of the NDIS rules.
  • Significant concern about DRCO resourcing to provide quality advice in the identified timeframes. 

4. Foundational Supports update, led by DSS

• Key Themes:
• DSS is working with state and territory governments to design Foundational Supports.
• DSS undertook national consultation on Foundational Supports beginning in September 2024 using engagement channels including online webinars, discussion papers, face-to-face engagement in all states and territories, and small group round tables.
  • The feedback provided through the Disability Royal Commission and the NDIS Review will also be incorporated.
  • DSS heard the following through consultation: 
    • Important to build local community organisation capacity. 
    • Important to have place-based, wraparound services.
    • Need to support youth transition points and pathways to employment.
    • Need to provide people access to individual advocacy and supported decision-making services.
    • Needs to be a central source of truth for information which is trustworthy, accessible, easy to navigate and up-to-date.
    • Important to have peer support and strength-based parenting programs. 
    • Important to have supports for carers and parents to build their capacity to engage with, and use, services.
    • Need improved early recognition and assessment. 
    • Need to upskill allied health workers.
    • Service providers need to exhibit trauma informed practices, be person centred and be culturally sensitive.
    • Need to support workforces in rural and remote settings.
    • Importance of sharing best practice in the community.
• Key Insights:
  • Significant concern the stated timeframe of 1 July 2025 for rolling out Foundational Supports is not achievable. 
  • Significant concern if government accelerates its processes to meet the 1 July 2025 deadline but without genuine consultation with the disability community, there will be risks to participant safety. 
    • Concern the feedback provided on Foundational Supports to DSS is being filtered through a third party and therefore will not be a true reflection of what the community is saying.
    • Need to ensure Foundational Supports link with other service systems in a simple, easy to use way. 
    • Concern organisations are closing, or will close, because they are not receiving funding during the period before Foundational Supports is rolled out.
    • Concern there will be workforce shortages to deliver Foundational Supports when it is rolled out because workforce development is not currently being prioritised by government. 
    • There needs to be detailed mapping of different government roles and responsibilities, including where they cross over, to ensure the community understands which organisation is responsible for what services and supports.

5. DRCO 2024 workplan discussion

• Key themes: The DRCO Secretariat sought feedback on DRCO membership eligibility criteria.
• Key Insights:
  • Membership cannot be limited to only disabled people's organisations. DRCO membership needs to reflect organisations that:
    • represent lived experience, including families and carers 
    • represent people with disabilities where because of abilities and age, they are unable to be the voice of the organisation.
      • Should not limit membership to only CEOs as some organisations operate under different governance structures.
      • A minimum percentage of organisations should be disabled people's organisations to ensure disability voices are not in the minority.
      • Need to ensure all states and territories are represented. 
      • Current organisations be grandfathered for the current funding round only.
      • Members must not have a conflict of interest and need a clear role in representing the direct interests of people with disability and carers.
      • There should be a way for the DRCO Forum to invite subject matter experts to attend for a defined period. 
      • The NDIA acknowledged the importance of the DRCO Forum and the esteem the Agency places on the Forum as a channel for sector collaboration.

6. DRCO 2024 workplan discussion

• Key themes: 
  • The NDIA is evaluating the implementation of legislation that came into effect on 3 October 2024. Of primary focus are the section 33 and section 10 legislative changes.
  • The Agency has a strong focus on evaluating the NDIS support lists under section 10 as the government works to develop the final rules for what is and is not a NDIS support.
  • The evaluation will:
    • use a developmental approach of continual evaluation over a 12-month period.
    • seek a combination of quantitative and qualitative data. Quantitative data will include financial and utilisation data. Qualitative data will focus on peoples’ experiences.
  • The evaluation criteria is designed to:
    • understand the effectiveness of the Agency’s implementation of the legislation, and
    • hear from participants, and the wider disability community, about their experiences of the legislative changes.
  • An evaluation advisory group has been established. 
  • The Agency is seeking to work with DRCOs to engage participants in the evaluation process.
• Key Insights:
  • The Agency should share data on:
    • the impact of the legislative changes implemented 3 October 2024
    • the projected impacts from the changes. For example:
      • percentage of people impacted
      • the dollar value of the changes.
• The Agency should employ and use disability organisations to run evaluation focus groups with people with disabilities as they have expertise and experience in doing so and understand the correct trauma informed processes for supporting engagement.
• Agency evaluation and monitoring needs to consider the nuance of engaging with First Persons.
• The Agency needs to have processes in place to monitor legislative change impacts so it can react quickly if any spikes in unintended consequences occur. There needs to be a process in place to allow for Agency intervention if the data reflects a spike to prevent unnecessary harm.

7. Market reform updates

• Key themes:
  • The Agency has established:
    • a Supported Independent Living (SIL) pilot and a Support Coordination pilot to:
      • identify features of quality service provision and good practice 
      • evaluate the costs and outcomes associated with providing quality services.
    • a four-year initiative to identify better payment options. Trial to involve combining two types of payment:
      • an enrolment payment 
      • an outcome-based payment.
      • a project to improve public data sharing on Specialist Disability Accommodation (SDA).
      • a project to comprehensively review the SDA design standards.
      • two pilots for alternative, place-based approaches to commissioning NDIS services to improve access to NDIS supports to First Nations and remote communities.
      • an Independent Pricing Committee to:
        • review the NDIS market structures to identify trends and challenges for NDIS providers across different disability markets  
        • provide advice on the use of price limits
        • provide advice and recommendations on a strategic pricing approach.
• Key insights:
  • The Agency needs to ensure people with lived experience are part of any committee they establish, specifically the independent pricing committee.
  • People with disability need to be directly involved in any negotiations the Agency has with providers to ensure people have a say on how services are designed and implemented.
  • The Agency needs to support provider flexibility to provide different service to participants as and when their needs change. 
  • There needs to be a range of SDA house designs, to ensure there are options for people with different SDA needs. 
  • The Agency needs to ensure participants have support to complain or raise issues in any Alternative Commissioning pilot.

Concern about workforce supply issues, for example Deafblind interpreters. The Agency needs to do more to increase supply in these areas.

Attendees

A4 Autism Aspergers Advocacy Australia, Australian Federation of Disability Organisations, Autistic Self Advocacy Network of Australia and New Zealand, Blind Citizens Australia, Brain Injury Australia, Carers Australia, Children and Young People with Disability Australia, Community Mental Health Australia, Deaf Australia, Deafblind Australia, Deafness Forum 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, Self Advocacy Resource Unit, Women with Disabilities Australia, Young People in Nursing Homes National Alliance

Apologies: Australian Autism Alliance