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

Submission 2253

To the Committee,

My 21 year old son has Angelman Syndrome, a permanent, significant, and complex disability requiring lifelong, individualised disability support. He represents the original intent of the NDIS. Sustainability must not come at the expense of safety, dignity, or human rights.

I support the call for a protected cohort of participants requiring 24/7 high-intensity support. Blanket funding cuts or ratio changes cannot safely apply to people with severe intellectual and communication disabilities. This protection is essential to prevent injury, abuse, crisis, or institutionalisation.

Caring for a child with Angelman syndrome far exceeds ordinary parenting — constant supervision, overnight care, medical management, and communication support. These responsibilities must be recognised as disability-related care, not typical parental duties. The proposed provisions risk making the extraordinary work of carers invisible and could deny essential supports.

SCCP and SIL funding enable adults with Angelman syndrome to live safely and meaningfully. Cuts to these supports transfer the burden back to ageing parents, threatening their health and independence. My son loves travelling outside the home. He requires 1:1 support to mobilise his wheelchair, enjoy some lunch, provide personal hygiene care, communicate and connect, and tend to behaviours of concern. Reduced ratios or funding directly compromise his safety and participation in outings. My son was even rejected from 2 separate day programs because his needs were too high, too much hard work. Imagine the isolation if he could only access funding for a low support staff ratio? He would not be accepted to participate in small group outings. He craves connection and engagement within the community; the isolation would be detrimental.

SIL arrangements depend on specific staffing ratios for safety. Block-funded or standardised models remove choice and accountability. Where staff ratios were reduced in the past during a day stay, my son needed to be left alone while another client required intense support, and in that time, he had a severe fall down a flight of stairs. Another time he was physically abused with multiple bite marks over his body, from another unsupervised client. He will steal food from those around him, engage in sensory-seeking behaviours involving him accessing his continence aide. He has a sleeping disorder. He requires supervision all through the night to keep him safe.

Speech therapy, occupational therapy, physiotherapy, and behaviour support are of the utmost importance in maintaining function and safety. Cuts to these services undermine communication, increase behavioural risks, and reduce independence.

People with Angelman syndrome have severe communication disabilities and require extra safeguards before any funding or policy changes. Communication support is central to safety, behaviour management, and dignity.

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

Submission 2253

I support calls for independent review rights for all plan changes. It is essential that there is allowance for parliamentary oversight and co-design with disability communities before new rules take effect.

Intense support of a person with such complex needs as those with Angelman Syndrome enables safety, participation, and family wellbeing. There will be real-world, dire consequences with the proposed cuts - loss of employment, severe effortion, family breakdown, isolation, and risk of harm.