Submission 1974

Submission to Community Aairs Legislation Committee

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

Background/Why this issue is important to me:

I am a sole parent to my 14 year old severely disabled nephew with multiple disabilities that limit his functional capacity across multiple domains and require him to have 24/7 support. He has been in my ongoing custody and care since he was seven months old.

His disabilities and areas of support include:

• Spastic Dystonic Quadriplegia Cerebral Palsy with a Gross Motor Function Classification System Level V ranking
• Cortical/Cerebral Vision Impairment which is both a physical and sensory impairment.
• Dysphagia requiring Enteral Meals by a Jejunostomy and Medication via a Gastrostomy.
• Non-Speaking and is reliant on a both High and Low Alternative Augmentative Communication Devices and smart partners to be able to communicate.
• Lennox-Gastaut Syndrome (a form of refractory Epilepsy requiring constant monitoring and support.
• Incontinent meaning he is reliant on continence aids and support to manage his personal cares.

As a result he has developmental delays and requires significant 24/7 personal cares and supports.

In addition to being his sole parent, I am president of his School’s Parents and Citizen’s association. The school specialises in providing education to students with Multiple Disabilities and a Vision Impairment (MDVI). A high percentage of the students at his school are not dissimilar to my nephew in respect of their disabilities and high care/support needs. In addition the school also has one of the highest percentage of students in out-of-home care as compared to other schools across the state.

The changes to this NDIS legislation are important to me as they would affect my nephew as well as his school mates quality of life and support. It would also see already overloaded and stressed parents baring the brunt of more caregiving and providing support to their growing children.

Submission 1974

My Concerns:

While I already have concerns about the existing support reductions I am seeing for many families across the school environment and being told by NDIS Planners, “You’re their parent it’s your job to be available 24/7 to care and provide support for your child.”

As most children grow, they develop skills and abilities to care for themselves. Amongst many things they learn how to walk, to drive, to cook, to shower and toilet themselves; go on independent outings with friends to the movies or a concert; have a sleepover at their grandparents or a friend’s house. For my nephew and a large proportion of his school mates this isn’t the case and they will always be reliant on someone to provide them with 24/7 care and support. With many of these supports required while parents of a normal baseline 14 year old would be asleep in bed.

Reducing supports for these vulnerable children would likely see more parents burning out, more broken families with divorce and relationship break ups, and potentially more children moving into out-of-home care. As a kinship parent to my nephew I am all too familiar with the out-of-home care systems and the additional pressures as well as layers of red tape it adds to providing children like my nephew with the best possible life.

The areas where I am concerned about with the bill changes are:

• Assessing functional capacity and switching to a robo-style functional capacity assessment.
  • Given a significant number of planners at the NDIA have no understanding of functional capacity or of disability and the impacts it has on an individuals life, I doubt they would be able to adequately assess an individual’s functional capacity.
  • Thankfully there are a huge number of Occupational Therapists (OT) in Australia who do understand functional capacity having spent several years studying to become an OT as well as ongoing professional development to maintain their accreditation.
  • OTs already spend significant time writing functional capacity assessment reports which are often ignored or not read by the planners.
• Reassessment/Changes to plans
  • This is another area of concern as children are growing and changing and will often need changes to their plans due to a host of reasons that could include:
    • A change in their functional capacity due to a change of/or new appearance of a disability.
    • New Assistive technology due to growth or ageing equipment being unserviceable or unable to be repaired eg. My nephew is about to have a growth spurt so I’m aware he will need a new wheelchair which will require trials and a likely reassessment. Our ageing vehicle is costing us more each day so we are in the process of purchasing a new vehicle that will require modification. Unfortunately this will require a reassessment to have the

Submission 1974

$35,000+ cost of the modification included in my nephews NDIS plan.

• Changes in goals due to moving into teenage years. Now that my nephew is a teenager he also requires changes to his NDIS goals due to changes in his interests and changes to his needs as he ages.

• These are all things that need to be taken into consideration when amending this legislation. Unfortunately a broad brush one size fits all approach isn’t eZective and isn’t a solution.

o I am lead to believe that the legislation will require an individual to seek all appropriate medical treatments for their disability before supports will be provided by the NDIS:

• Who makes the decision about an appropriate medical treatment? Will the NDIS be employing medical professionals?

• Every medical treatment carries risks and benefits whether the treatment is appropriate or not.

• Not all appropriate medical treatments are covered by the public health system which is where a large proportion of individual with complex and multiple disabilities rely on for their medical treatment.

• As an example. A vagus nerve stimulator can be used to treat some forms of epilepsy but with that surgery comes many risks as well as benefits. In the same vein an intrathecal Baclofen pump can provide relief for people with increased spasticity as a result of their disability. But that surgery has multiple risks with a 25% chance that additional surgeries will be required following insertion. Not to mention infection risks. The pump also requires an individual to have appropriate and reliable supports in place.

• Given a large proportion of NDIS planners don’t understand the complex crossover between disability and health concerns as well as treatments there needs to be robust measures put in place here to ensure that individuals with a disability aren’t left high and dry without supports while they are waiting for treatment and/or if the treatment isn’t pursue for a range of reasons as well as the individuals right to not risk a treatment or being unable to aZord to pay for a treatment..

o Broad reductions in support categories or capping category costs:

• This is concerning as every individual is diZerent especially when it comes to children and young people. Every family situation is diZerent and each requires diZerent level of supports. Applying a broad brush approach as I’ve already mentioned isn’t okay.

• For example I am sole parent to my nephew. I have to be available 24/7 to support him as a consequence I don’t work and am reliant on carer payment to survive. I don’t have any family or friends that are willing to learn how to provide support to my nephew and administer his cares. They want to be there to support me and by my friend and help me live my life when that is possible. I have

Submission 1974

approximately 7 hours of broken sleep each night as my nephew needs to be repositioned multiple times a night and also requires his food bottles to be changed as he receives most of his daily nutrition while he sleeps. We went through an 18 month process at his last plan reassessment which almost damaged me completely. The planner refused to provide explanations for her decisions, the internal reviewer provided inadequate explanations and didn’t even read the correct reports (they read out of date reports) and then the Minter Ellison Lawyers (who showed up once during the multiple AAT sessions) and NDIS/AAT staZ member both had no concept of disability or the impacts of such on an individual’s life. We eventually got a reasonable and workable outcome but it was soul destroying, intrusive and almost broke.

§ Applying a cookie cutter approach and saying well children only need x hours of in home support or x hours of capacity building would be unreasonable as the impact of every child’s disability and living situation is diZerent depending on their circumstances

Summary/Conclusion:

While I understand that it is necessary for a tightening within the NDIS and a reduction in fraudulent providers taking advantage of vulnerable people it shouldn’t be at the cost of:

• vulnerable children and adults with complex multiple disabilities.
• Putting more pressure on already stretched parents, families and carers.
• Family and relationship breakdowns due to increased responsibilities put on parents, families and carers.
• Making it more diZicult for children and young people with multiple and complex disabilities to be able to have independent developmental experiences like those of their normal baseline peers. Eg. Going to the movies or ten pin bowling with friends etc.

Thanks for your consideration of my response.