Submission 1601

Hello, I am a 71 year old father to a 36 year old son with Down Syndrome, a moderate to severe heating loss, aphasia and other diagnosed disabilities. He is non-verbal and requires 24/7 supervision and care to undertake basic daily activities such as toileting, dressing, food preparation, dressing, brushing teeth, nail cutting, road safety etc. He also takes various medications each day. He has been in a group home with SIL funding and three other participants for the past 20 months. He gets on well with the other participants and staff and is well loved by all.

Before this time, my 68 year old wife and myself took care of all his needs and my wife, in particular, still continues her involvement in his life through doing daily paper work and email/phone communications (plans, budgets, expenditure reviews and invoice approval) and meetings on site with OTs, speech therapists and physiotherapists. We also provide and maintain one of our personal cars onsite at the house which his support workers use to transport him on his activities (due to the prohibitive cost of having support workers use their own vehicles).

I would like to start by reminding the parliament that it is the government that introduced this scheme, it is the government that permitted the scheme to be implemented in a hurry without proper controls and safeguards, it is the government that has permitted people to enter the scheme when they should never have been admitted, and it is the government that has permitted the administration of the scheme to become a large bureaucratic behemoth – but it is the participants of the scheme such as my son who are going to ultimately be adversely affected by the proposed actions to address the negative consequences arising from these multiple government failures.

I would now like to comment on various aspects of the proposed legislation amendments.

Social and Community Participation Budget

I refer to proposed budget allocations for social, civic and community participation supports being reduced by 50%.

The Minister has stated that $12bn per year is spent on social and community participation, which is up from the $4bn per year from 5 years ago. The Minister has further described this as ‘runaway growth’, but it is not clear whether this growth is due to increased budget spends on individual plans or increased numbers of people entering the scheme, or both. It certainly hasn’t significantly increased for us over the years.

Our son really enjoys going out with his support workers five days a week, into the community, doing things he can’t do on his own but which non-disabled people can do every day. The proposed reduction will theoretically cut his time with such activities in half, meaning he will be stuck in the house for much longer; however, his current SIL funding does not cover the extra time he will have to spend in the house under the care of his current SIL provider.

The NDIS’s own research from 2022 (Getting out in the World - Pathways to community participation and connectedness for NDIS participants with intellectual disability, on the autism spectrum and/or with psychosocial disability - see https://dataresearch.ndis.gov.au/media/3768/download?attachment) makes it clear that:

… access to social resources (such as those derived from social relationships,

Submission 1601

Social networks and interactions can lead to improved health and wellbeing, self-esteem, self- confidence, and levels of independence as well as protect individuals from experiencing poor mental health during times of life stress (Berry & Welsh 2010; Kawachi & Berkman 2001; Lakey & Orehek 2011; Milner et al. 2016; Olstad et al 2001)

I fail to see how cutting the budget for these activities in half can do anything but limit the achievement of the benefits described above – particularly for those suffering from Down Syndrome. This is further supported on pages 59-60 of the Government’s own Impact Analysis Report from May 2026 – see https://oia.pmc.gov.au/sites/default/files/posts/2026/05/Impact%20Analysis_0.pdf

          .. participants with a primary disability of visual impairment, Down syndrome, and
      Intellectual Disability may be more affected by this change. For these cohorts, total
    committed supports for SCCP budgets are higher than the overall Scheme proportion.

While understanding the need for overall budgetary cuts, the initiative proposed will clearly be detrimental to our son’s wellbeing and ability to properly engage with the community. The effects will effectively result in further micro-institutionalisation of my son within the confines of his group home. Perhaps this is the government’s ultimate objective?

Comment: Why a flat 50% for everyone? Why not 10% or 30% or 80%? There appears to be no science behind this. It is attacking the “low-hanging” fruit and will detrimentally affect certain groups of disabled people such as our son, more than others. Maybe this figure should be determined at a later date based on further community consultation and detailed scenario analysis.

The above 2022 report further states that:

 … People with intellectual disability, on the autism spectrum and/or psychosocial disability
      often experience disproportionate barriers to social, community and economic participation
    compared with people with either physical disability or no disability.

Comment: Why is nothing been done about this? I suggest that it is probably too hard to address but that doesn’t mean it is not worth looking at. Otherwise, participants are hit with a double whammy i.e. reduced financial ability to participate in activities along with continuing to face societal barriers to their participation where such funding exists.

Ministerial Powers

The proposed amendments provide the federal Minister for Disability and the NDIS with a significant increase in power and discretion not normally seen in such types of legislation.

For example, the government’s own explanatory summary material from May 2026 – see https://www.health.gov.au/sites/default/files/2026-05/ndis-amendment-securing-the-ndis- for-future-generations-bill-2026—fact-sheet.pdf (under Schedule 3) states that responsibility for pricing decisions will be transferred to the Minister for Disability and the NDIS (when it is currently managed through the NDIA). This is significant because pricing directly determines the real value of participant supports.

Submission 1601

Another example (see Schedule 1) is a proposed power allowing the Minister (through legislative rules and plan variation mechanisms) to reduce funding in support categories, including potentially below what may previously have been considered “reasonable and necessary”.

Other areas of concern are in relation to scheme eligibility (based on functional capacity assessments – see Schedule 1) becoming dependent on ministerially approved assessment instruments outside of the statute, and the proposed new framework planning system (see Schedule 4) becoming rule-based giving the Minister indirect but extensive influence over matters such as how budgets are calculated and supports are classified.

An overall expansion of ministerial rule-making powers provides the Minister with almost dictatorial powers including the ability to make rules without the usual level of state/territory agreements.

Suggestion:

Is it the objective of the proposed Act to transfer many important NDIS-related decisions either directly or indirectly to the Minister of the day? Does the NDIS Act then just become a shell enabling it to be manipulated and modified outside of its original intentions by the government of the day? How will this benefit participants? Moreover, where does the Minister have the time to undertake such activities?

Participant Communications

Another of the proposed amendments concerns participants who cannot be contacted by the NDIA.

The government’s own explanatory summary material from May 2026 (see https://www.health.gov.au/sites/default/files/2026-05/ndis-amendment-securing-the-ndis-for-future-generations-bill-2026---fact-sheet.pdf) states: Part 7 allows the NDIA to suspend an individual’s plan when reasonable attempts to contact them have been made and a response or adequate response has not been provided.

           It also allows an individual's status as a participant to be revoked if their plan has

been suspended for at least 90 days when the NDIA has not been able to contact them.

What does “reasonable attempts” or “adequate response” mean?

Losing participant status would not merely be a pause in funding; it could mean removal from the scheme itself, potentially requiring reapplication or reassessment to regain access.

As an illustration of the problems raised by such clauses, when our son first entered the scheme, a planner contacted my wife on the phone wanting to speak to our non-verbal son. Regardless of our insistence that he was no-verbal, she insisted that she speak to him alone. Other friends of ours with disabled children experienced the same insanity.

Suggestion:

These clauses will need to be considerably softened to properly consider the difficulties experienced by many participants in their communications with the

Submission 1601

NDIA. To leave as is could be viewed as unconscionable behaviour by the government in relation those who are its most vulnerable clients.

Thank you

27 May 2026