Submission 1802

Submission to the Senate Standing Committee on Community Affairs

Inquiry into: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Date: May 28, 2026

1. Executive Summary

As a household of two aging parents single-handedly managing the intense, 24/7 care of three adult sons with profound, multi-layered disabilities, we submit our urgent feedback regarding the proposed NDIS legislative reforms.

Our situation is reaching a breaking point. Over the past 25 years, the unrelenting physical and emotional caring load has severely compromised our own health. We now manage multiple chronic, debilitating illnesses ourselves. Compounding this, we live in Berri, South Australia, a rural/regional area that the advertiser says is in the top 30 for worst ndis supported areas in Australia, where thin markets and severe capable worker shortages mean we already have highly restricted access to any vital services.

While we support efforts to eliminate fraud & as a family we actively choose to go without a service or support rather than spend ndis funding on providers or services who are unable or incapable of providing the supports the proposed “New Framework Planning” and standardised assessment rules pose a catastrophic risk to our family’s safety and survival. Furthermore, the current system relies on the assumption of “informal care” by parents, which has completely broken down in our case. If our funding is reduced, restricted, or made less flexible, our family faces immediate, systemic collapse.

2. Our Family’s Reality: A Compounding Household Crisis

2.1. The Sons’ Complex, Intersecting Needs

We are full-time parent-carers managing three separate, highly complex adult participants. This doesn’t even include the caring roles & work we provide outside of our immediate families — we both have aging parents & one of my siblings has multiple disabilities that we also help when needed These diagnoses do not exist in isolation; they actively compound one another every single day:

• The Clinical Picture: All three sons live with Autism & Developmental delays while each of our boys have other disabilities eg ADHD, PDA, severe anxiety, and intellectual disability.

Submission 1802

• The PDA Challenge: Pathological Demand Avoidance requires highly specialised, low-demand, trauma-informed support. Standard behavioral interventions fail. If a support worker does not understand PDA, it triggers severe anxiety escalations and behavioral crises.

• The Household Dynamic: Managing one individual with this profile is a full-time role. Managing three means our home is a high-pressure environment where an escalation from one son frequently triggers an anxiety or medical crisis in the others. Did we also mention all 3 of our boys are giants they are all over 2m tall & big boys we believe they range from 130kg to 160kg + we haven’t been able to weigh them since their patrician cut off supports once they turned 18

2.2. The Toll on Us: Aging Parents with Chronic Illnesses

After 25 years of continuous, high-stress caregiving with minimal respite, & being forced to advocate for decades for the basic supports we enjoy now eg carer payment & allowance etc our bodies are showing the wear & tear we have been hiding for decades & they are breaking down. As parent-carers, we are currently managing a heavy load nobody is capable of understanding unless you live this life of chronic illnesses directly caused or worsened by this long-term load:

• Severe Sleep Apnea & High Blood Pressure: Chronic stress and lack of sleep have led to severe sleep apnea and cardiovascular strain, putting us at high risk for major health events.

• Neuropathy & Hypermobility: Managing joint instability from hypermobility while physically handling care needs has caused sprained, disjointed & broken bones, nerve damage and chronic neuropathy, causing daily, debilitating physical pain.

• Lipo-Lymphoedema: This painful, chronic swelling severely limits my own mobility, making the physical demands of lifting, cleaning, and managing three adult men increasingly impossible.

2.3. The Regional Disadvantage: Thin Markets in Berri, SA

Living in the Riverland region (Berri, SA) severely limits our access to any real support within the disability sector.

• Lack of Specialists: There is a critical shortage of allied health professionals, specialized therapists, and trained support workers in our area.

• No Agency Options: Standard NDIS registered agencies often cannot provide staff to regional towns, or the staff lack the specific training required to handle epilepsy and PDA safely.

Submission 1802

• Forced Self-Reliance: Because of this thin market, we have had to rely on a small, carefully built team of independent workers. Any policy that restricts our ability to use these local, unregistered independent workers will leave us completely without support.

• Fighting the NDIA in the ART for basic reoccurring transport level 3 to level 2 with multiple sons multiple times now, payments to help with travel costs e.g. all of the 3 hour drives to Adelaide whether it be for allied health, specialists, providers, social & community participation, shopping in department stores or fun e.g. watch a movie, arcade games, bowling or fast food

Critical Concerns with the Proposed 2026 Reforms

3.1. The Failure of the “Informal Care” Model and Basic Centrelink Support

The NDIS framework heavily relies on “informal supports”—usually meaning unpaid family care.

• The Reality: Centrelink’s Carer Payment, Carer Allowance, and Carer Supplement were designed to assist with standard, baseline caring responsibilities for up to one person for 25 hours a week not multiple parents on call 24/7 or 168 hours each week caring for multiple people. They are entirely inadequate for the extreme 24/7 labor required to manage three profoundly disabled adults simultaneously.

• The Gaps: Because of the thin market in Berri, we are routinely forced to perform the specialized roles of paid support workers, behavioral therapists, and medical monitors ourselves. We are doing hundreds of hours of high-risk, professional-grade labor every week entirely unpaid, while our own bodies deteriorate.

• The Exclusionary Rule: The rigid NDIS ban on paying family members for core support services forces us to remain in poverty and ill health, even though hiring external staff even the ndis agree to do to do the same work would cost the NDIS significantly more—if those workers even existed in Berri.

3.2. The Threat of Standardised “Support Needs Assessments”

The Bill introduces standardised Support Needs Assessments to determine global budgets.

• The Flaw: Standardized assessment tools evaluate individuals in a vacuum. They completely ignore the “force multiplier” effect of three disabled adults who are siblings living under one roof, and they fail to calculate that the primary carers are themselves physically disabled by chronic illness.

Submission 1802

• The Risk: If an assessor uses a generic checklist, our sons’ functional realities will be heavily underestimated, and our inability to fill the gaps due to our own health crises will be ignored.

3.3. Mandatory Registration Barriers

The proposed shift toward mandatory registration for daily living providers severely threatens our continuity of care in Berri.

• The Flaw: Finding workers in regional SA who understand PDA, autism, and epilepsy simultaneously is incredibly rare. Small, local independent workers cannot afford the heavy cost and administrative burden of NDIS registration.

• The Risk: If our trusted, independent local workers are locked out due to mandatory registration barriers, there are no agency staff in Berri to replace them. The entire burden of care will fall solely back onto two disabled, chronically ill parents.

4. Primary Recommendations to the Committee

To prevent the systemic collapse of multi-participant, regional family units, we respectfully urge the Senate Committee to implement the following safeguards:

1. Allow Payment for Family Carers Under Extreme Circumstances: Amend the legislation to explicitly allow NDIS funds to be used to pay family caregivers for core support hours when a household has multiple high-needs participants, where the carers face significant chronic health issues, and where a regional "thin market" makes sourcing external workers impossible. This payment should compensate for the intense labor that goes completely "above and beyond" the scope of Centrelink’s baseline Carer Payment. The ndis planners have the evidence of this work all in front of them but are also demanding the carers already providing so much to also show the need and work they have done yet again to prove we have tried can you please allow planners to be paid to do the investigative works with the carers so the responsibility is not placed yet again solely on the carers shoulders also

2. Mandate Carer-Health and Household Impact Assessments: Introduce a mandatory rule requiring the NDIA to assess the cumulative impact of a household when multiple high-needs participants live together, specifically accounting for the physical health and age of the primary caregivers. Without ripping families apart & removing anyone from the family home

3. Regional and "Thin Market" Exemptions: Create automatic legislative exemptions for participants living in regional and remote areas (such as the

Submission 1802

Riverland, SA), ensuring they retain full flexibility to hire independent, non- registered workers when registered agency staff are unavailable. Also look into why Whyalla SA gets extra funding for travel cost and the Riverland doesn’t but we are the same distance away from Adelaide?

• Protect Clinical Weighting for Complex Needs: Ensure that for complex, multi- layered diagnoses (especially those involving epilepsy and PDA), the evidence of long-term treating clinicians must legally override any generic, standardised NDIA assessment tool.

Thank you for reviewing our family’s critical circumstances. We submit this out of survival, hoping to protect our sons’ safety, our own failing health, and our capacity to keep caring for them at home.