NDIS changes: my opinion on what this means for families and participants?

I’ve been reading through the information about the changes coming to the NDIS, and I am worried as both a parent and a counsellor working with neurodivergent people and their families. There are a lot of changes coming over the next few years. Some of the key changes include:

-       how people access the NDIS

-       how plans are created and funded

-       how reasonable and necessary supports are assessed

-       reduced funding for some social, community and skill building supports October 2026

-       how plans are renewed February 2027

-       new guidelines around what parents are expected to provide for children, including supervision, personal care, transport, emotional support and behavioural support

-       new planning framework being introduced April 2027

-       NDIS access requirements beginning January 2028

The changes are going to happen gradually and not everyone will be affected at the same time or in the exact same way. But the proposed changes are being described in ways that don’t seem to acknowledge the work of parents and other informal supports for vulnerable people in our community.

As a counsellor, I see every day how complex neurodivergent behaviour and emotional regulation can be. What can look like challenging behaviour is often a person attempting to communicate. It can be a response to sensory overload, anxiety, demands, communication difficulties, trauma, exhaustion or a nervous system that is struggling to cope. When we focus only on changing the behaviour, we lose the ability to stay curious about what is actually happening to the person. I am worried about what happens when the additional support required to understand and respond to these needs is shifted further onto families.

Many parents and participants are already exhausted. They are coordinating appointments, advocating with schools, managing therapies, supporting emotional regulation, navigating the NDIS and trying to meet the needs of their other children and their families. Many parents also find it incredibly difficult, or sometimes impossible, to maintain full time employment while managing the needs of their children. This can mean reducing hours, changing careers, stepping away from work altogether or choosing work that provides greater flexibility.

And this isn't only about children and parents.

I am also thinking about the many adults who have received a diagnosis later in life and have spent years trying to understand why things that seem easy for other people have been so difficult for them. People who have spent years working out what they need, what environments work for them and what helps them feel connected, capable and hopeful. I am thinking about young people and adults who don't have strong informal supports around them. Not everyone has a parent, partner, family member or friend who can step in to provide emotional support, supervision, advocacy or help with everyday life. For some people, the supports they receive through the NDIS have taken years to find. They may finally have a team around them who understands them, supports their goals and helps them build a life that feels manageable. What happens when those supports are reduced or become harder to access? For some people, supports have finally helped them understand themselves, participate in their community, maintain relationships, work, study and feel hopeful for the future. What happens when someone spends years trying to find the right support, finally gets some stability, and then has to start fighting for it again.

I know this personally.

I had to stop doing work from before having children and create my small business to ensure I had the flexibility to earn an income and remain available for my children. I have not paid myself superannuation for more than seven years. That is a significant long term financial impact. The unpaid work involved in supporting children with additional needs doesn't just affect what a parent can earn today. It affects career progression, financial independence, superannuation and retirement security. A huge amount of this work continues to fall on mothers.

I am tired. I know so many other parents are too. I am also furious.

I understand that the NDIS needs to be sustainable. I understand that changes need to be made. I also think we need to be very careful about how we define what is considered ordinary parenting and what is actually additional support required because of disability. My concern is that if we don't understand the difference, families may be left carrying more responsibility without having the support they need to do it. For me, this isn't about wanting parents to do less. Parents already do so much. It is about making sure families and participants have the right support, information and professional input to understand their needs and help them build lives that work for them.

And honestly, who gives a shit about how us parents are going?

Who is looking at the parents who have had to reduce their hours, change careers or leave work altogether? Who is thinking about the financial impact of years without superannuation? Who is looking at the people who are already burnt out, financially stretched and completely exhausted? Who is going to look after us and our families?

I don't have all the answers about what these changes will mean yet. I think that is part of what makes this feel so awful.

There are too many people whose lives depend on getting this right.

I’ll continue to follow the changes and share information as I see fit. If you are a parent or NDIS participant, I’d really like to hear how you are feeling about the changes and what questions or concerns you have.