NDIA Accountability Project

This project is in DRAFT

Impact of funding cuts on people with Down syndrome (Family or carer experience)

‹ PrevPage 1 of 4 · Source p. 1Next ›

Submission 692 - Supplementary Submission

SUPPLEMENTARY SUBMISSION

Senate Community Affairs Legislation Committee

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill

2026 Submitted: 29 May 2026 CONFIDENTIAL — Submitter requests anonymity. Name and identifying details not for publication.

Introduction and Purpose of Supplementary Submission

I have already made a submission to this inquiry. This supplementary submission adds detail on matters that my original submission addressed in general terms but that warrant more specific treatment: the particular impact of this Bill on people with intellectual disability, and the regional and remote implementation risk for participants.

I am a person with lived experience of disability and a family carer for a sibling with Down syndrome who is a current NDIS participant. I contribute to health and disability system improvement in Queensland and co-convene a peer support group for people with disability in Far North QLD region. I am not writing on behalf of any organisation.

  1. Intellectual Disability: Why This Cohort Faces Disproportionate

Risk

People with intellectual disability are not a homogeneous group, but they share characteristics that make the specific mechanisms in this Bill particularly dangerous for them. These are not hypothetical risks, but are predictable consequences of applying a standardised, algorithm

driven system to a population whose  disability  is defined by  its impact on cognition,

communication and adaptive functioning.

1.1 Functional capacity assessment and the problem of supported communication

Schedule 1, Part 1 of the Bill establishes the legal framework for access decisions based on functional capacity assessment. For a person with intellectual disability, the validity of any

functional capacity assessment depends  entirely on the conditions under which   it  is

conducted.

People with intellectual disability frequently require:

  • Supported decision-making to understand what is being asked of them

  • Familiar communication partners or augmentative and alternative communication (AAC) supports to express their capacity accurately

  • Multiple sessions rather than a single assessment to produce reliable results

  • Assessors with specific training in intellectual disability rather than generalist functional assessment

A standardised assessment tool that has not been independently validated across population groups, as the Australian Psychological Society has formally raised, is not a neutral instrument. It is a filter that is structurally likely to overestimate independent functioning in daily

Submission 692 - Supplementary Submission

life. The result is systematic exclusion of people whose disability presentation does not conform to the tool’s assumptions.

The committee should ask the government: has the functional capacity assessment tool been validated specifically with people with intellectual disability, including those who use AAC and those who require supported decision-making to participate in assessment? Has it been

validated  for  First Nations populations? Does  it have value  for assessing people with

fluctuating disabilities? If not, the Bill should not proceed until this validation is complete.

1.2 Community participation is not discretionary for people with intellectual disability

The Bill enables a 50% reduction to social, civic and community participation budgets from 1 October 2026. For some NDIS participants, this is a significant but manageable reduction. For people with intellectual disability, it is categorically different.

For a person with intellectual disability, community participation is not a lifestyle enhancement. It is the mechanism through which the following are maintained:

  • Established social relationships and support networks outside the family

  • Routine and predictability, which are often central to psychological stability for this cohort

  • Skill maintenance: social and communication skills require practice in real community contexts

  • Physical health: structured activity that prevents the sedentary patterns associated with poor health outcomes in people with intellectual disability

  • Safeguarding: visibility in community settings and known relationships with trusted non-family adults are protective factors against abuse and exploitation

My sibling has Down syndrome. His community participation budget funds structured group activities and supported community access that he has built his weekly life around for years. These are not activities he can simply access independently if the funding is cut. He requires direct support to participate safely and meaningfully. The $200 million Inclusive Communities Fund, distributed to organisations rather than individuals, does not replicate this.

A person without intellectual disability may be able to self-advocate, negotiate alternative

arrangements or access mainstream community  activities independently   if  their NDIS

participation funding is reduced. A person with intellectual disability generally cannot. The assumed agency that underpins the participation funding reset does not apply equally across the NDIS population.

1.3 Plan rollovers and the administrative burden on families

The Bill ends automatic plan rollovers. For families supporting a person with intellectual disability, plan administration is already a significant burden. The assumption that plan reviews can be actively managed by or on behalf of participants does not account for:

  • The cognitive and communication demands of plan review processes on participants themselves

  • The capacity of family carers, many of whom are ageing parents providing lifelong unpaid support

  • The absence of independent advocacy in many regional and remote areas to support participants through review processes

Ending plan rollovers without simultaneously guaranteeing adequate independent advocacy support, particularly in thin market regions, will result in some of the most vulnerable

Submission 692 - Supplementary Submission

participants losing supports not because their needs have changed, but because the administrative burden of review exceeded what they or their families could manage in time.

1.4 The Royal Commission obligation

The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with

Disability documented extensively the conditions under which people with intellectual disability are most at risk. Those conditions include:

  • Isolation from community: reduced social visibility increases exposure to closed, unmonitored environments

  • Dependence on single carers or small support networks with no external oversight

  • Loss of trusted non-family relationships built through community participation

  • Transitions to under-resourced settings without adequate monitoring The budget reduction and eligibility tightening in this Bill, applied without adequate transition

    planning, recreates precisely those conditions for a subset of the intellectual disability

    population. The government cannot simultaneously accept the findings of the Royal

Commission and pass legislation that foreseeably increases isolation, reduces community visibility, and removes people from formal systems before alternative safeguards are operational.

This is not hyperbole. It is a direct consequence of the mechanism. The committee should require the government to demonstrate that its modelling of the participation budget reduction has specifically considered the safeguarding implications for people with intellectual disability.

  1. Far North Queensland: Why Regional Disaggregation of the

Impact Assessment Matters

My original submission raised the thin market problem in Far North Queensland in general terms. I want to be more specific here about why the geographic equity gap matters for the assessment framework as well as the participation funding cut.

2.1 Assessment access in regional and remote Queensland

Functional capacity assessments of the kind contemplated in Schedule 1 require qualified assessors. In Far North Queensland, the Allied Health workforce is insufficient to meet current NDIS demand. Waiting times for assessments through existing providers already extend to months in some areas.

A new standardised access assessment regime that depends on available Allied Health assessors will not function equitably in FNQ. Participants in Cairns face workforce constraints. Participants in Cape York, the Torres Strait, and remote communities face near-complete absence of local assessors. Telehealth assessment for intellectual disability and psychosocial disability is not equivalent to in-person assessment. The committee should ask whether the government’s implementation planning for the assessment framework includes specific provision for regional and remote participants, and what the expected wait times are for assessment in thin market areas.

2.2 The Inclusive Communities Fund will not reach FNQ at scale

The $200 million Inclusive Communities Fund is a national fund distributed to organisations. The organisational infrastructure required to access, administer and deliver that funding is concentrated in south-east Queensland and major metropolitan centres. FNQ community

Submission 692 - Supplementary Submission

organisations, including those serving people with disability, are typically small, under resourced and already operating at capacity.

The practical effect is that participation funding will be reduced for FNQ participants, and the replacement infrastructure will be built primarily where infrastructure already exists. The geographic equity gap will widen, not narrow. The committee should require geographic disaggregation of the Fund’s allocation methodology and confirmation that thin market regions will not simply be left without replacement supports.

  1. Summary of Additional Recommendations In addition to the recommendations in my original submission, I ask the committee to:

  2. Require the government to provide specific evidence that the functional capacity assessment tool has been validated across populations.

  3. Require the government to provide its modelling of the participation funding reduction disaggregated by disability type, specifically addressing the cohort of people with intellectual disability for whom community participation is a safeguarding mechanism, not a lifestyle preference.

  4. Require the government to confirm what independent advocacy support will be available to support participants with intellectual disability through the new plan review process, including in regional and remote Queensland.

  5. Recommend that no person with intellectual disability be transitioned off the scheme or have their participation budget reduced until the Inclusive Communities Fund has demonstrated operational capacity in their geographic area.

  6. Note in the committee report that the geographic disaggregation of implementation risk, including for Far North Queensland, Cape York, and the Torres Strait, has not been adequately addressed in the government’s published materials.

I am willing to provide further information or to appear before the committee if that would assist its deliberations.

Anonymous submitter

Far North Queensland

29 May 2026