Submission 819
Concerns Regarding Proposed NDIS Reforms
To Whom It May Concern,
I am writing as the parent and primary carer of my son, who is diagnosed with Autism Spectrum Disorder (Level 2) and Type 1 Diabetes, with further investigation underway regarding suspected Ehlers-Danlos Syndrome (EDS)/hypermobility.
I wish to express serious concerns regarding the proposed NDIS reforms currently under discussion and the potential unintended consequences these changes may have on children and families with complex intersecting disabilities and chronic health conditions.
While I understand the importance of ensuring the long-term sustainability of the NDIS, I am deeply concerned that the proposed move toward stricter functional assessments, narrower interpretations of “reasonable and necessary” supports, and increased reliance on mainstream systems may fail to adequately recognise the real-world complexity of participants like .
The Interaction Between Autism and Type 1 Diabetes
Although Type 1 Diabetes is classified as a medical condition, it falls under Disability Discrimination Act 1992 its daily management cannot be separated from ’s disability-related functional impairments. It is significant to state that there needs to be a standard national management of diabetes in schools. Currently there is not and it could be considered that NDIS participants who make up a certain percentage have T1 diabetes and attend school.
Autism Spectrum Disorder significantly affects:
● executive functioning ● emotional regulation ● sensory processing ● interoceptive awareness ● initiation and sequencing of tasks ● safety awareness and independent decision-making
Managing a lifelong autoimmune condition with no cure requires constant cognitive processing, monitoring, planning, and rapid responses to blood glucose fluctuations. For a child with ASD Level 2, this creates a substantial and ongoing mental and emotional load.
My son found it incredible difficult to fit into main stream catholic school and we had no choice but to switch to distance education to ensure he would receive quality education
Submission 819
Episodes of hypoglycaemia and hyperglycaemia directly impact:
● concentration and learning ● behavioural regulation ● fatigue and shutdown ● emotional stability ● participation in education and social settings
As a result, Type 1 diabetes management needs are inseparable from his disability support needs. I am essentially his sole support with no informal or formal support and he is unable to self inject insulin due to hypermobility in his hands. In turn we homeschool with an online school because no schools will inject insulin for him in the rural area we live in here in Queensland.
I am concerned that proposed reforms focusing on narrower functional criteria or requiring participants to exhaust “all appropriate treatments” may overlook the cumulative and compounding effect of chronic medical management on neurodevelopmental disability.
Concerns Regarding Reduced Supports and Standardised Assessments
I am particularly concerned about:
● increased use of standardised assessments ● automated or highly standardised planning processes ● reduced flexibility within plans ● limitations to reassessments ● tightening of support categories and funding eligibility
Children, like my son often present differently depending on environment, sensory load, fatigue, glucose stability, and emotional safety. Functional capacity can fluctuate significantly from day to day and may not be accurately captured through rigid or standardised assessment models.
I am also concerned that proposed reductions in community participation and support flexibility may negatively affect children with autism who rely heavily on structured supports to safely access education, therapy, and social participation. Currently my son receives 10 hours per 3 month period which provides no consistency for him or significant respite for me his carer. We are both overwhelmed and due to rising costs of living I have had to forfeit a motor vehicle in order to maintain a safe home for both of us.
Importance of Assistive Technology and Early Supports
For ASD living with T1D , supports such as:
● tubeless insulin pump technology, provides automation and independence ● continuous glucose monitoring systems, provides safety in monitoring ● sensory-informed assistive technology, keeps T1D in range with blood sugars
Submission 819
● allied health supports, this has been the most valued support for my son ● capacity-building interventions, the mental load of care and decisions is relentless are not optional conveniences.
They are essential tools that:
● reduce executive functioning burden ● improve emotional regulation ● increase independence ● reduce long-term support costs ● support safe participation in education
Without these supports, my son requires significantly higher levels of supervision and intervention throughout the day. In a recent review, a NDIS case worker stated that verbally and in an summary that NDIS would consider support worker/nurse 2-3 per day to support insulin by injection a cost of up to $65,000 PA opposed to assistive technology i.e untethered insulin pump and CGM sugar pixel for display for carer or teacher to see without scanning CGM 20 or more times per day at a cost of less than $3500 PA. This does not align with the reform making budget cuts when his package is less than $90,000 over 5 years. This in particular should be a scenario to be considered. My son has applied for pump through Breakthrough T1D however he has been unsuccessful since he was diagnosed 5 years ago. When a T1D child is maintained good A1c they get overlooked for this funding.
Future Planning and Stability
Our family is currently planning a relocation to New South Wales prior to my son commencing high school in 2028 to ensure greater long-term stability, access to informal support with family, and educational continuity. I am a sole parent and my children and I are victims of long term domestic violence and coercive control.
At the same time, we are navigating Family Court proceedings to review existing parenting arrangements due to concerns regarding ’s emotional wellbeing and feelings of safety. Due to my former husband’s family’s continued legal pursuit I know I am close to $80,000 in debt due to legal fees to protect my son from an abusive alcoholic. I am a full time carer with no part time income due to my responsibility, navigating both parenting and 24/7 medical care is very challenging with no family support here in Queensland. I paid close to $20,000 in therapy and assessments prior to my son having his NDIS package approved after 3 denied applications and no referral from Bush Kids when it was identified via DP4 when he was 5 years old.
During periods of instability and transition, consistency of disability support is critically important. Proposed reforms that create uncertainty around access, reassessment, or continuity of funding may place vulnerable children and families at increased risk.
Submission 819
Request for Genuine Consultation and Disability-Informed Decision Making
I respectfully ask that policymakers ensure:
● meaningful consultation with families and disability communities ● recognition of the interaction between chronic illness and disability ● flexibility within functional assessments ● preservation of participant choice and individualised supports ● safeguards against overly rigid or automated decision-making processes
Children with complex neurodevelopmental and medical needs cannot always fit neatly into standardised systems. Within this framework I would assume there would be conservatively 200 children that would fit our scenario and feel that to have a significant impact on 200 or more families.
The NDIS has been life-changing for many families, including ours. I strongly urge decision-makers to ensure future reforms continue to uphold the principles of inclusion, individualisation, early intervention, and long-term functional capacity building.
Thank you for considering our concerns.
Kind regards,