Submission 888
NDIS Submission – Impact of Current NDIS Changes on Families Caring for
Children with Profound Disabilities
Regarding Maeve Hamel
To Whom It May Concern,
My name is Taylah Cox and I am the single mother and sole full-time carer of my daughter, Maeve Hamel. I am writing this submission regarding the impact current NDIS changes, funding restrictions, and increased scrutiny surrounding supports are having on my daughter and families like ours.
Maeve is a two-year-old child with profound and highly complex medical and developmental disabilities. Her Functional Capacity Assessment outlines that she requires 24-hour care and supervision due to the severity of her disabilities, safety concerns, medical complexity, communication impairments, behavioural needs, and dependence across all areas of daily living.
Maeve’s diagnoses include:
- Severe congenital hydrocephalus
- Rhombencephalosynapsis
- Multiple brain malformations
- Cerebellar hypoplasia
- Severe mixed sleep apnea
- Laryngomalacia and tracheomalacia requiring supraglottoplasty
- Feeding difficulties with G-tube dependence
- Visual impairment
- Global developmental delay
- Intellectual disability
- Gomez-Lopez-Hernandez syndrome
- Autism Spectrum Disorder Level 3
- Hypophosphatasia
- Epilepsy These are lifelong, permanent, and extremely complex disabilities which affect nearly every aspect of Maeve’s daily life and functioning.
Submission 888
Maeve is non-verbal, G-tube dependent, requires constant supervision, has significant developmental delays, no safety awareness, mobility impairment, emotional regulation difficulties, and behavioural challenges including self-injurious behaviours. She requires support for all self-care tasks including feeding, toileting, dressing, bathing, mobility, communication, emotional regulation, and participation in daily life.
Maeve’s Functional Capacity Assessment clearly states that she requires 1:1 support at all times due to her complex medical and developmental needs, high falls risk, seizure disorder, poor safety awareness, and dependence across all functional domains. Her support needs significantly exceed what would be expected for a neurotypical child her age and are far beyond normal parental responsibility.
I have not been able to work for the past three years because I am Maeve’s full-time carer. Her care requirements are constant, intensive, and medically complex. Every day involves:
- PEG feeding and medical management
- Monitoring seizures and medical complications
- Mobility support and fall prevention
- Emotional and behavioural regulation
- Coordinating multiple specialists and providers
- Transporting Maeve to specialist appointments and intensive therapies
- Attending and implementing therapy programs
- Constant supervision for safety What is often overlooked in these discussions is the reality of what life actually looks like for families caring for children with profound disabilities.
I am not only Maeve’s mother — I am her full-time carer, nurse, advocate, therapist, medical coordinator, researcher, case manager, behavioural support person, mobility support worker, communication partner, emergency responder, and the person responsible for every aspect of her daily survival, safety, development, and wellbeing.
Every single day involves managing medical needs, coordinating specialists, attending therapies, implementing therapy programs at home, monitoring seizures and respiratory concerns, managing equipment and consumables, advocating within medical and disability systems, researching treatments and supports, completing endless paperwork, fighting funding decisions, and ensuring Maeve remains safe at all times.
Families like ours live in a constant state of exhaustion, stress, and pressure. We are repeatedly required to prove and justify our child’s disabilities, support needs,
Submission 888
therapies, equipment, and care requirements to access supports that are already medically recommended and evidence-based.
We are asked to provide report after report, assessment after assessment, while simultaneously trying to survive the reality of caring for a child with extremely complex needs 24 hours a day.
The emotional, physical, and financial toll this takes on families is immense. Caregiver burnout is real. Mental exhaustion is real. Isolation is real. The fear of losing essential supports is devastating because these supports are not luxuries they are what keep children like Maeve safe, supported, developing, and able to participate in life.
We are currently living during a severe cost of living crisis and the financial strain associated with caring for a child with complex disabilities is overwhelming. There are ongoing out-of-pocket costs relating to travel, specialist appointments, medical equipment, therapies, consumables, continence products, PEG supplies, feeding support, and daily care needs.
Despite these pressures, I continue to do everything possible to ensure Maeve receives the intervention and support she needs to have the best quality of life possible.
Maeve’s Functional Capacity Assessment clearly demonstrates that she requires ongoing multidisciplinary intervention including physiotherapy, occupational therapy, speech therapy, feeding therapy, behavioural support, assistive technology, consumables, and support work funding. These therapies are not optional. They are essential and medically necessary.
The assessment outlines that without these supports Maeve is at risk of:
- Regression in skills
- Increased developmental delay
- Greater long-term dependence
- Increased risk of injury
- Social isolation
- Reduced communication development
- Reduced mobility and physical functioning
- Increased behavioural concerns
- Caregiver burnout
- Increased future support needs
Submission 888
Early intervention is critical for Maeve due to her young age and neurodevelopmental complexity. Delays to funding approvals, reduced supports, or barriers to accessing therapy place her long-term outcomes at serious risk.
Maeve requires specialist intensive therapy programs in Sydney because equivalent supports are not available locally. These programs have resulted in significant improvements in her development, communication, mobility, and participation. Without NDIS funding, these interventions would not be financially possible.
The public health system alone cannot provide the level of disability-specific intervention Maeve requires. Public services are limited by long waiting lists, reduced therapy frequency, lack of intensive multidisciplinary programs, and limited regional access.
The NDIS exists to bridge this gap and provide children like Maeve with the opportunity to reach their potential and participate meaningfully in life.
I understand the importance of protecting the integrity of the NDIS and addressing fraud within the system. However, the current approach appears to be placing increasing pressure and scrutiny on genuine families caring for profoundly disabled children, rather than targeting the root causes of misuse.
If fraud within the industry is a concern, there should be stronger investigation and regulation of providers, agencies, and businesses operating within the disability sector. Families like ours should not be the ones carrying the burden of proving our child’s needs over and over while large-scale provider overcharging and questionable billing practices continue within the system.
The costs associated with disability supports, therapies, equipment, consumables, and services are often extraordinarily high and continue to rise. Many families are left with significant out-of-pocket expenses despite already facing financial hardship due to full time caregiving responsibilities and inability to maintain employment.
Greater transparency, accountability, and regulation across the disability industry is needed to ensure funding is being used appropriately while still protecting vulnerable participants who genuinely rely on these supports for their safety, wellbeing, and development.
Genuine participants and families should not lose access to life-changing and medically necessary supports because of failures within other parts of the system.
Further cuts, restrictions, and barriers to accessing support do not just affect funding on paper. They place real human beings in danger. They place vulnerable children at risk of regression, injury, reduced quality of life, and poorer long-term outcomes. They push already overwhelmed families closer to crisis.
Submission 888
Families caring for profoundly disabled children should not have to spend their lives fighting systems in order to access essential care and support for their child.
Maeve deserves the opportunity to continue developing, learning, communicating, and participating in the world around her.
I respectfully ask that the NDIS continue to fund the supports recommended in Maeve’s Functional Capacity Assessment without reduction and that policymakers consider the devastating impact further cuts and barriers will have on families already living under extraordinary pressure.
Thank you for taking the time to consider our submission and the very real impact these changes have on families like ours.
Yours Sincerely,
Taylah Cox
Mother, Full-Time Carer and Advocate for Maeve Hamel
Phone: 0423 280 716