National Disability Insurance Scheme Amendment Bill

Submission regarding proposed NDIS legislation. I am writing as the sister of two adult brothers with severe disabilities, and as the daughter of a parent who is an NDIS participant due to an acquired brain injury and vision impairment, and as the daughter of a parent who is the carer for these family members.The family I advocate live with complex permanent disabilities (emphasis on permanent) Severe autism spectrum disorder ASD intellectual disability anxiety obsessive compulsive disorder OCD they experience firsthand navigating ndis system maintaining stability safety quality life They Adelaide Accessing services appointments therapies supports already places considerable strain particularly regional barriers complexities coordinating care multiple people disabilities Our concerns this legislation relate primarily following The impact their social community supports being reducing or removed Impact capacity building supports reduced or removed Changes definition permanence Whilst support genuine efforts prevent fraud exploitation misuse within ndis concerned burden disproportionate level scrutiny compliance resulting increased risk supports reduced or removed If participants’ disabilities are permanent Their support at foundational must reflect level Of permanence Participant With permanent will needs may grow evolve throughout life stages living arrangements medical circumstances health complications naturally ‘as needed’ Participants Support team lucky enough propose review plans accordingly Should not however undergo standardised justify ongoing reliance existing plan Different planners interpret same needs differently This creates constant uncertainty stress fear about whether vital supports continue For People with severe And permanent disabilities repeated reassessments inconsistent interpretations can be highly distressing destabilising Concerned increasing reliance functional capacity assessments reports without transparency guidance families Assessments through simplified models alone result reductions Existing support Plans My brothers father have used large amounts funding from their plans to pay Functional capacity assessment Reports still did contain information NDIA wanted Families left trying coordinate evidence requirements clear guidance repeatedly retell Highly personal traumatic details About disability daily functioning Process emotionally exhausting deeply stressful for participants carers Specific example Recently both of my brothers were unexpectedly scheduled April (their existing plans due end August) When informed planner we had updated reports prepared

Submission 1841

we were told that it did not matter because the review was “only” to add Specialist Disability Accommodation (SDA) and Supported Independent Living (SIL) into the plan so future housing options would be available when they are ready to move into their own home. However, during the actual plan meeting conducted over the phone, it became clear the plan decisions had effectively already been made before any meaningful discussion occurred. We were asked for very little input; there was no proper discussion about goals, daily functioning, progress, or changes in support needs and we were then told reports were too old.“When we reminded the planner she stated reports were not necessary because “nothing else would change” our concerns were dismissed.” Despite this significant changes were made to supports including removal of some therapies and decisions stating both my brothers require limited one-to-one support for a few hours per day with remaining support delivered at an eight-hour ratio which is extremely concerning frightening family group-based ratios are not always appropriate safe people severe autism intellectual disability severe language disorder anxiety OCD communication difficulties sensory regulation needs complex behaviors or support requirements reduced individual support can increase distress dysregulation social withdrawal behavioral escalation risks safety inability communicate needs effectively unable access community safely reduce capacity participate therapy appointments meaningfully daily activities also major inconsistencies between planners previous planner recognized realities regional living approved support hours accounted travel time newer plans removed these entirely fortnightly banking support provided shorter year plan allowed opportunities review adjustment another planner who made significant changes without consultation placed youngest brother onto five-year plan This extremely frightening if decision inappropriate harmful forced lengthy review processes tribunal proceedings simply seek reconsideration essential supports reducing participant supports does make need disappear it only shifts burden further ageing parents exhausted carers families already operating beyond capacity Reducing respite participation supports does not reduce their again transfers greater pressure on already exhausted families increases risk long-term crisis outcomes ultimately more harmful costly broader system Respite Community Supports Not Optional Extras Families Living Complex Permanent Disability Essential Support Sustain Caring Relationships Family Stability Long-Term Participant Wellbeing In My Own Family These Supports Played Critical Role Helping Remain Connected Maintain Stabilize Continue Care Adult Brothers Home Within Their Community We Seek Genuine Consultation Disabled Australians Ensuring Accessibility Adequate Timeframes Meaningful Participation Built Legislative Process Itself People Most Directly Affected Reforms May Least Practically Able Participate Fully Without Substantial Support, Time Advocacy Assistance Accessible Materials Urge Committee Ensure: -Participant Rights Procedural Fairness Central All Reforms -Independent Review Appeal Mechanisms Protected -Assessment Tools Methodologies Transparent -Reforms Do Over-standardisation Automation

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

Submission 1841

• Anti-fraud efforts remain focused on providers and organised exploitation rather than creating additional barriers for participants • Mandatory disability-specific training for NDIS staff and planners • Better understanding of autism, intellectual disability, acquired brain injury, anxiety, OCD, psychosocial disability and complex support needs • Consideration for regional participants and families facing travel barriers • Recognition that medical needs are often closely connected to disability supports • Protection of community participation supports • Greater transparency around evidence and report requirements • Clearer explanations for decisions and refusals • Recognition of evidence from long-term treating therapists and allied health professionals • A process that takes into consideration an element of permanent support, reducing stress, uncertainty, repeated reassessment, and administrative burden for vulnerable participants and carers. Participants themselves and/or the families and carers for people with severe & permanent disabilities should not have to continually fight to prove time and time again that their needs are legitimate. They should not need to defend supports that are essential to daily life and community inclusion. We ask Parliament carefully consider the real-world impact these reforms will have on participants with severe&permanent disabilities, complex support needs and their family carers before passing legislation that may reduce supports or increase barriers to accessing them. Respectfully, redacted: s24 - irrelevant material