12 October 2026
By Darryl Steff, CEO, Down Syndrome Australia
We are concerned that support determinations, introduced as part of the recent NDIS changes, will have a significant impact on people with Down syndrome and their families and may not consider individual needs or risks.
The Government has argued that the new Support Determination framework contains an important safeguard for people with 24-hour disability support needs. The Down Syndrome Australia Consortium welcomed that safeguard when it was added to the legislation. However, its implementation risks excluding many of the very people it was intended to protect.
The explanatory materials provide an example of “Daniel”, a person receiving around-the-clock support through a combination of NDIS-funded supports.
Daniel can access the High Support Needs variation pathway when a Support Determination reduces his community participation funding because the reduction creates a gap in the supports required to maintain his continuous 24-hour care arrangement.
But what if Daniel needs exactly the same level of support, but his family provides much of it instead of paid workers? Under the current rules, that difference will determine whether the safeguard protects him.
Imagine Daniel lives at home. He requires support or supervision throughout the day and night to remain safe. His parents help him manage emergencies, medication, meals, decision-making and daily routines. The NDIS funds part of his support, while his family provides the rest.
If a Support Determination reduces his funding by $75,000, the impact may be identical. Daniel may lose supports that enable him to participate in the community, maintain routines and remain safely at home. However, Daniel may not qualify for the High Support Needs variation pathway. This is because the threshold is based on the value of his NDIS-funded supports rather than the full level of support he needs, including support provided by his family.
In other words, two people can have the same support needs and experience the same reduction in essential supports, but only one is protected. The difference is not their level of need. It is whether paid workers or family members provide more of their support.
That raises an important question. If the purpose of the safeguard is to protect people who require 24/7 support, why does it matter who is delivering that support?
The current approach risks overlooking people whose 24-hour support needs are largely met by family and informal supports rather than formal service arrangements. The Down Syndrome Australia Consortium and Inclusion Australia have previously warned, and as has been emphasised in the Saturday Paper this weekend. The need does not disappear simply because a family member is providing the support.
The test should be based on a person’s support needs and risks, not on whether those supports happen to be funded by the NDIS. Otherwise, we risk creating a system where families who have worked hard to keep their relative connected to family, community and ordinary life are disadvantaged compared with those in more formal support arrangements.
The NDIS should not create incentives for people to move into higher-cost, more service-based models of support simply to retain access to safeguards. Nor should it assume that informal supports can always absorb the loss of funded supports without consequences, like having to leave paid work and burnout
If a funding reduction creates a gap in the support a person needs to remain safe, connected and living in their preferred arrangement, that should trigger protection regardless of whether the missing support was previously provided by a paid worker or by family.
The principle is simple: people with the same level of support need should be treated consistently, regardless of who currently provides that support. If we fail to do that, we risk undermining the very safeguarding protections the legislation was intended to provide.
I will be in Canberra this week to discuss these issues directly with Ministers, MPs and the Department. I will urge the Government to ensure the safeguard works as Parliament intended by protecting people according to their actual support needs and risks, regardless of who currently provides their support.
For interview requests or comment, please contact Down Syndrome Australia at media@downsyndrome.org.au