New NDIS rules could leave people with complex support needs worse off and increase costs
Inclusion Australia and the Down Syndrome Australia Consortium are warning that people with intellectual disability, Down syndrome and complex support needs could be left worse off by the way new safeguards for people with 24-hour support needs are being applied. The warning comes on the eve of significant NDIS funding changes taking effect.
From 1 October 2026, funding for social, community and civic participation supports will be reduced by 50% when participant plans are created or reassessed. Eligible participants with 24-hour disability support needs will be able to seek a plan variation to maintain critical supports, which was an important change to the draft legislation before it was passed.
However, Inclusion Australia and the Down Syndrome Australia Consortium are concerned that the way 24-hour support needs are being defined means only funded disability supports are included. This means some people with genuine 24-hour support needs may not be able to access the new safeguards because their support needs are currently being met by family and informal supports rather than through funded Supported Independent Living (SIL) or similar arrangements.
Darryl Steff, CEO of Down Syndrome Australia, said decisions about 24-hour support needs have overlooked what support means in practice for many people with intellectual disability, Down syndrome, and similar chromosomal variations.
“Too often, people think about 24-hour support as someone providing active support every minute of the day. For many people, the real question is much simpler: would they be safe without support?”
” Who makes sure a person eats, takes medication or knows what to do in an emergency? Who responds if someone knocks on the door? Who helps people make decisions? “
“Many families provide that support every day. The need does not disappear simply because it is being provided by family rather than paid workers.”
“A person’s support needs should be assessed based on what they need to live safely and well, not based on whether those supports are currently funded through a formal service.”
“Cutting social and community participation supports for these individuals without providing a variation pathway risks putting these informal supports at significant risk.”
Inclusion Australia CEO Maeve Kennedy said the changes risk creating unintended consequences that are a contradiction to the goals of the NDIS.
“The original intent of the NDIS was to support people with disability to have lives like others in our community, in the arrangement that works best for them. It should not create incentives for people to move into more formal support settings simply to maintain access to essential supports.”
“That outcome would be bad for participants, bad for families and could ultimately increase costs for the Scheme. The NDIS should be encouraging people to live less service-based lives and give them the option to live an ordinary life without risking their support budget.”
“The current definition risks overlooking people whose 24-hour support needs are largely met by family and informal supports. We urge the Government and the NDIA to review these settings before they reduce choice, increase safeguarding risks and drive demand for more costly support arrangements”
Ms Kennedy said the organisations were particularly concerned about the impact on people’s participation, inclusion and safety.
“For many people in our communities, social and community participation supports are what make it possible to be part of the community, build relationships, contribute and live a good life. These supports should not be treated as an optional extra”
“We have continually said that community participation is an important safeguard. It helps people stay connected, visible and supported by a wider network of people.”
“When people have fewer opportunities to participate in community life, there is a greater risk of isolation and fewer opportunities for concerns about wellbeing or safety to be noticed.”
Both organisations support efforts to ensure the long-term sustainability of the NDIS but say sustainability must not come at the expense of fairness, inclusion or good policy design.
Mr Steff said reforms should recognise the contribution families make and ensure people with equivalent support needs are treated equitably.
“People with the same level of support need should be treated consistently, regardless of whether that support is currently being provided by paid staff or by family.”
“We are calling on the Australian Government and the NDIA to closely monitor the impact of these changes and ensure people with genuine 24-hour support needs are not excluded from safeguards because of how their support is currently delivered. A robust risk assessment and escalation process will be essential to identify unintended consequences early, particularly where reductions in social, community and civic participation funding may affect a person’s safety, inclusion, and the sustainability of their informal supports, including the ability to remain living at home.”
ENDS
You can read the definition of 24/7 support needs on the Department of Health, Disability and Ageing website here
Media contact: [email protected]
Maeve and Darryl are both available for comment