Protecting essential support for vulnerable young people with Angelman syndrome (Family or carer experience)

Submission 2649

Personal Submission:

NDIS Getting the NDIS Back on Track Bill

Re: , 16 years old. Angelman Syndrome

01/06/2026

To whom it may Concern,

Re: Protecting essential support for vulnerable young people, including those with Angelman syndrome

I am writing to express my strong support for the protection of vital funding and services for individuals living with severe disabilities, including teenagers with Angelman syndrome, such as my daughter.

is a 16-year-old girl who, like any young person, deserves the opportunity to live safely, with dignity, and as meaningfully as possible within her family and community.

However, due to Angelman syndrome, is unable to care for herself and relies entirely on her parents and carers for all aspects of her daily needs.

The level of care required is constant and demanding, placing significant physical and emotional strain on her family.

The impact of any reduction in her essential support would be profound.

Without appropriate funding, one of ’s parents would be forced to give up full-time employment to meet her care needs.

This would create substantial financial hardship and further emotional stress for the family, who are already managing an exceptionally challenging situation.

I suffered a brain bleed in 2025 and require ongoing extra support to assist full-time care with , compounding the pressures faced by the household.

For families like ours, support services are not optional they are essential for maintaining stability, wellbeing, and basic quality of life.

Cutting or reducing these supports would not only jeopardize ’s care but also place her entire family at significant risk of hardship.

I respectfully urge you to ensure that this Bill prioritises and protects our most vulnerable citizens. Maintaining adequate funding and support structures is critical to enabling individuals like to live with dignity and allowing their families to remain resilient and supported.

1. Core Message

Submission 2649

represents exactly who the NDIS was created to support a young person with a permanent, significant, and complex disability requiring lifelong, individualised care. Any reforms focused on “sustainability” must not compromise her safety, dignity, or human rights.

2. Protection for People with Profound Disability requires 24/7 high-intensity support. She cannot be safely supported under blanket funding cuts or standardised staffing ratios. Without explicit protections for profoundly disabled participants like , the consequences could include injury, crisis situations, or inappropriate institutional care.

3. Parental Responsibility Caring for far exceeds ordinary parenting. Her parents provide.

 Constant 24/7 supervision day and night

 Overnight care and sleep interruption

 Medical management daily and seizure monitoring

 Communication support for a child who cannot speak or advocate for herself.

These are disability-related care responsibilities, not typical parental duties. The proposed “parental responsibility” provisions risk making this extraordinary work invisible and could deny essential supports.

4. Young People (13–18 years) At 16, deserves the same opportunities as her peers to participate in community life. SCCP (Social, Community and Civic Participation) funding is often the only way teenagers with profound disabilities can safely engage outside the home and not relying on parents 24/7.

Cuts combined with parental responsibility rules would force ’s parents out of the workforce, increasing financial strain and emotional exhaustion. This disproportionately affects female caregivers.

5. Vulnerability and Safeguarding has severe communication disabilities — she cannot advocate for herself or report harm.

Before any funding or policy changes affect her, extra safeguards must be in place.

Communication support is central to her safety, behaviour management, and dignity.

requires all of this to live daily.

6. The Strain on Family ’s parents carry an immense burden. Without adequate NDIS support:

 Their health and independence are at risk.

Submission 2649

 Workforce participation becomes impossible.

 Family wellbeing deteriorates.

 The risk of carer burnout and crisis increases.

7. Call to Action We urge the government to:

 Establish a protected cohort for participants requiring 24/7 high intensity support.

 Ensure independent review rights for all plan changes.

 Require parliamentary oversight and co-design with disability communities before new rules take effect.

 Recognise that caring for profoundly disabled children is not ordinary parenting.

Closing

In summary, sustained and adequate funding for individuals with complex disabilities such as and including other children with Angelman syndrome, this is a critical policy responsibility.

Any reduction in support risks shifting substantial care burdens onto families, leading to increased economic hardship, reduced workforce participation, and greater long-term pressure on health and social systems.

This Bill should explicitly safeguard access to essential services and ensure that funding frameworks remain responsive to high-support needs.

Protecting these provisions is fundamental to achieving equitable outcomes and upholding a fair and effective social support system for our most vulnerable citizens.

Kind Regards

Parent of