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

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

Executive Summary

As a household of two aging parents single-handedly managing the intense, 24/7 care two adultssonswithprofoundmulti-layeredisabilities, we submit urgent feedback regarding proposedNDIS legislative reforms. Our situation is reaching breaking point Over past years unrelenting physical emotional caring load severely compromised own health now manage chronic debilitating illnesses ourselves Compounding thislive Berri South Australia ruralregional area that advertiser says top ndis supported areas in Australia thin markets capable worker shortages mean highly restricted access vital services While support efforts eliminate fraud family actively choose go without service or support rather than spend ndis funding providersor services who unable incapable providing supports New Framework Planning standardised assessment rules pose catastrophic risk ourfamily’s safety and survival Furthermore current system relies assumption informalcareparents which has completely broken down case Ifourfunding reducedrestricted made less flexible faces immediate systemic collapse

Our Family’s Reality: A Compounding Household Crisis

.1 The Sons’ Complex Intersecting Needs We are full-time parent-carers managing three separate complex adult participants This doesn’t even include caregiving roles work we provide outside families both haveaging parents one sibling multiple disabilities help when needed These diagnoses do not exist isolation they compound each day:

• The Clinical Picture: All sons live with Autism Developmental delays while boyshave other eg ADHD PDA severe anxiety intellectual disability

National Disability Insurance Scheme Amendment Submission

Submission ID: 1802

Section A - Challenges Faced with Pathological Demand Avoidance (

PDA) The PDA Challenge: Pathological Demand Avoidance requires highly specialised, low-demand trauma-informed care that standard behavioral interventions fail to address effectively. If not understood correctly, it can trigger severe anxiety escalations\nbiohavioral crises for both individuals receiving such services as well as their caregivers.

Household Dynamics Managing one individual on this profile demands full-time attention; managing three means navigating an environment fraught \with high pressure where even minor incidents from one son may leadto significant emotional distress among others.

Additionally mentioned are concerns regarding weight management due to boys’ height (over two meters tall)and size ranging between approximately $356$ kg ($794 lbs)$ up until they turned eighteen years old when support was cut off under a different system called ‘patrician’. This highlights ongoing challenges in providing adequate physical health monitoring amidst caregiving responsibilities.

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

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 movie arcade games bowling fast food

Critical Concerns With the Proposed Reforms: The Failure Of Informal Care Model And Basic Centrelink Support:

The NDIS framework heavily relies upon informal supports—usually meaning unpaid family care.- The Reality: Centrelink’s Carer PaymentCarer Allowance and Carersupplement were designed assist standard baseline caring responsibilities up one person week not multiples parents call 24/7 hours each week caring three profoundly disabled adults simultaneously inadequate extreme labor required manage thematically themselves deteriorate - Gaps: Due Berri thin market routinely forced perform specialized roles paid support workers behavioral therapists medical monitors ourselves hundreds high-risk professional-grade every week entirely unpaid while own bodies deteriorate- Exclusionary Rule: Rigid ban on paying family members core services forces remain poverty ill even though hiring external staff ndis agree do same work would cost significantly more if those workers existed Berri.

Threat Standardised

National Disability Insurance Scheme Amendment

Submission 1802

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 no agency staff in berri replace them entire burden fall solely back onto two disabled chronically ill parents.

Primary Recommendations To Committee

to prevent systemic collapse multi participant-regional family units respectfully urge Senate committee implement following safeguards: - Allow Payment For Family Carers Under Extreme Circumstances Amend legislation explicitly allow ndis funds be used pay family caregivers core support hours when household has multiple high-needs participants where carers face significant chronic health issues thin market makes sourcing external impossible payment should compensate intense labor goes completely above beyond scope Centrelink’s baseline Carer Payment ndis planners have evidence this work all front demand carers already providing much show need they done yet again prove tried can please allow planners paid do investigative works with carers responsibility not placed yet on shoulders also - Mandate Carer Health Household Impact Assessments Introduce rule requiring NDIA assess cumulative impact households live together specifically accounting physical age primary caregivers without ripping families apart removing anyone from home - Regional Thin Market Exemptions Create automatic legislative exemptions for participants living regional remote areas such as

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

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 to us is not the same distance as Adelaide?

• Protect Clinical Weighting for Complex Needs: Ensure that for complex, multi-layered diagnoses especially those involving epilepsy or PDA), the evidence of long term treating clinician must legally override any generic standardized NDIA Assessment Tool. Thank you for reviewing our families critical circumstance. We submit this out o f survival hope protecting our son’s safety ,our own failing health,and our capaci ty to keep caring for them a t hme.