Autistic son's therapies at risk due to permanency definition (Family or carer experience)

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Submission 493

Submission to the Inquiry into the National Disability Insurance Scheme Amendment (Securing the

NDIS for Future Generations) Bill 2026

Date:

24 May 2026

Submission

The NDIS has been incredibly important for my family. My son is autistic, and supports through the

NDIS have helped him access therapies and accommodations that improve his communication,

regulation, participation, independence, and overall wellbeing. Without these supports, many things that

other families take for granted become significantly harder to manage.

I feel deeply worried about the proposed changes to the NDIS Act, particularly around the definition of

“permanence” and the requirement for people to undertake “all appropriate treatment” before being

considered eligible for support. It feels unrealistic and unfair to expect disabled people and families to

pursue every possible treatment before accessing support, particularly when many treatments are

expensive, inaccessible, unavailable in some areas, or place a significant emotional, physical, and

financial burden on families without guaranteeing meaningful outcomes.

I am also concerned about the proposed changes around functional capacity assessments. Autism and

many other disabilities do not present in a completely consistent way from day to day, and functioning

can be heavily influenced by stress, sensory overload, fatigue, environment, and the availability of

support. A narrow or rigid assessment process risks overlooking the real-world challenges disabled people

experience in daily life.

I do not feel these changes have been explained clearly enough. Many families are confused about what

the changes would mean in practice, who may lose access to supports, and how decisions would actually

be made. It is deeply upsetting that disabled people, and their families are being asked to carry the burden

of fixing problems within the system that were not created by them. People who rely on the NDIS for

essential support should not be paying the price for government mistakes, poor planning, fraud, or failures

in administration.

As a parent, I am exhausted from constantly having to justify, advocate for, and prove my child’s needs in

some settings, while in other settings having to prove that he is “disabled enough” to access support.

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Submission 493

Families should not have to live in a constant cycle of proving and defending their child’s needs in order

to receive appropriate services and accommodations.

I am also concerned about proposed restrictions around plan reassessments. Disabilities and support needs

are not always static, particularly for autistic children whose needs can fluctuate significantly depending

on environment, stress, sensory demands, schooling, burnout, and life changes. Restricting reassessments

to situations involving “significant and ongoing” changes may make it harder for families to respond to

increasing support needs before situations reach crisis point.

For my family, reducing or removing social, community, or capacity building supports would have a

significant impact. These supports are not “extras.” Capacity building supports have helped my child

develop communication, emotional regulation, independence, and participation in everyday life. These

supports help children build skills, maintain relationships, participate in the community, and reduce long

term support needs over time.

Without these supports, I believe my child’s wellbeing and ability to participate meaningfully in daily life

would decline. As a parent, these supports also reduce stress and burnout for our entire family. Without

them, the caring load on families increases dramatically and many parents are left exhausted, isolated,

unable to maintain employment, or struggling to care for their own health.

I am also worried about increasing reliance on other service systems to meet disability-related needs.

Many families already experience long waitlists, high costs, limited service availability, and major gaps

between healthcare, education, mental health, and disability systems. In practice, these systems are often

already overwhelmed and unable to provide the level of support disabled people require. Tightening

NDIS access without ensuring genuinely accessible alternatives risks leaving vulnerable people without

meaningful support at all.

I am also concerned that these changes may disproportionately affect autistic people and others whose

disabilities may not fit a narrow or highly medicalised idea of “permanence.” Disability support should

not depend on whether a person can afford expensive treatments or endlessly prove they have “tried hard

enough.”

I also want to raise concerns about the broader impact these changes may have on small, allied health

providers and the disability workforce. I work in allied health myself, and I can already see the

uncertainty affecting families, clinicians, and services.

Many small practices rely on NDIS funding to continue operating, particularly in regional and community

settings. If supports are reduced or access becomes more restrictive, there is a real risk that families will

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Submission 493

lose access to experienced therapists and local supports. If clinicians leave the disability sector due to

instability, administrative burden, or funding uncertainty, participants may lose access to trusted providers

and continuity of care.

Early intervention and capacity building supports are often what reduce long-term support needs and

improve long-term outcomes. Reducing access to these services may create greater costs and pressure on

families, schools, healthcare systems, and communities over time.

I understand that the NDIS needs to be sustainable and well managed. However, I strongly believe

reforms must be approached with genuine consultation, transparency, fairness, and compassion. Disabled

people and their families deserve stability, dignity, and access to supports that allow them to participate

meaningfully in their communities.

I urge the Government and Parliament to carefully reconsider aspects of this Bill that risk reducing access

to essential supports, narrowing eligibility, or placing further burden on disabled people, families, carers,

clinicians, and the broader disability community.

The real-life impact of these changes on participants, families, small providers, and the allied health

workforce must be carefully considered before these reforms are implemented.

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