NDIA Accountability Project

Carer describes impact of NDIS amendments on family member’s routine and access to supports

‹ PrevPage 1 of 3 · Source p. 1Next ›

Submission 1839

Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600

Phone: +61 2 6277 3515 community.affairs.sen@aph.gov.au

29/05/2026

To whom it may concern

As a Carer for 31 years’, I have seen and lived through pre-NDIS state funding whilst caring for my family member with Cerebral Palsy, Intellectual Disability and Epilepsy, where we had to constantly beg for supports both Allied Health and Community Participation daily.

My family member was entrenched in group programs, and their routine and safe space has been built around these communities, with her school friends (now adults) all coming together within day programs funded under NDIS.

Although this is not how I wished for my family member to live out their life in a group setting, they now choose this, being cognitively aged 5 year’s old, they love this environment and now, this bill will take this away from my family member.

I am an aging parent, what little funding we have received through NDIS is solely used on daily assistance to dress, feed, transport our family member.

I cannot figure out why this current government has spent the last few years doing everything in their power to get Carer’s( particularly women) back into the workforce, yet these current amendments to the bill will put all carer’s back on Centrelink payments and remove us from supporting our own families financially.

Of course, we will have to be there to physically support our family members 24/7, this of course will lead to rapid physical and mental health decline.

IT WILL COST MORE to now care for all the sick carer’s (I cannot afford a dentist) I will also not even be able to maintain my own health if you take away our sole provider/ ABN/ contracted support workers and our community participation funding.

My family member has suffered unbelievable abuse and neglect by “registered providers” over the last 31 year’s.

I will not tolerate that happening again.

I will call upon every carer to relinquish our family member’s on your already over taxed healthcare system.

These changes, along with stripping away our rights to review and question any changes to our lives, allowing the Minister’s new power under section 34A to reduce funding without meaningful appeal rights is deeply dreadful.

For people with lifelong disabilities, funding decisions are not abstract policy issues — they determine whether we can shower safely, attend appointments, access food, leave our homes, or avoid crisis situations.

Removing the ability to properly challenge harmful decisions creates fear, insecurity, and a dangerous imbalance of power. Disabled people deserve procedural fairness and protection, not less oversight.

Submission 1839

The current public discussion and media representation suggests that participants are routinely using NDIS funding for luxury outings, entertainment, holidays, or discretionary recreation.

While isolated examples may attract the media attention, they do not reflect the reality for the overwhelming majority of Australians living with disability.

For many participants, social and community participation funding is not about “fun”. It is about disability support.

The Government appears to be increasingly reframing disability support itself as an “everyday living expense” simply because the activity being undertaken resembles ordinary life.

This fundamentally misunderstands both the purpose of the NDIS and the concept of reasonable and necessary supports under the NDIS Act.

The issue is not whether grocery shopping, attending appointments, accessing the community, participating in day programs, attending religious activities, maintaining employment, or engaging in ordinary life are “everyday activities”.

The issue is that many people with disability cannot safely or independently undertake these activities without disability-related support.

A support worker assisting a person with intellectual, cognitive, physical disability, and behavioural complexity, to safely access the community is not funding a leisure activity, it is funding a disability support.

For many participants, this funding is what allows them to:

  • attend medical and allied health appointments
  • shop for groceries, clothing, and essential personal items
  • maintain employment or supported employment
  • attend structured day programs
  • access the community safely
  • reduce severe social isolation
  • develop routine, structure, and functional capacity
  • participate in ordinary life with dignity, privacy, and safety

Many day programs, supported employment services, and community participation providers rely heavily on this category of funding to remain operational. These are not simply recreational services.

They provide critical supervision, routine, behavioural support, social connection, skill development, community access, and stability for people who may otherwise deteriorate significantly or require more intensive and costly crisis responses through health, mental health, emergency, housing, justice, and state-based systems.

The repeated public portrayal of these supports as “beach trips and movies” is not only misleading, but deeply damaging to people living with disability and the services that support them.

The proposed shift toward broader group-based supports and “Inclusive Communities” style models may suit some participants, but it cannot replace the need for individualised 1:1 supports where required.

Treating group supports as a universal substitute for individualised disability support, risks excluding the very people the NDIS was created to support! And as yet these ‘inclusive communities’ programs don’t actually exist.

I am also deeply concerned about the impact these reforms may have on disability employment and supported employment providers. Many NDIS participants rely on social and community participation funding to maintain employment and workplace participation with the disability-related support they require.

Significant reductions in this funding risks undermining years of progress toward workforce participation and inclusion, and places significant expectations on the families, carers, and other funded systems to take the load.

The NDIS Act was established to support the social and economic participation of Australians with disability - not to narrow participation based on political optics or public misconceptions.

I urge the Government to:

  • Abandon blanket reductions to social and community participation funding.

Submission 1839

  • Protect access to 1:1 disability supports where functionally required.
  • Protect funding that sustains day programs, supported employment, and community participation supports.
  • Ensure reforms remain consistent with the principles of reasonable and necessary support under the NDIS Act and broader Human Rights obligations.
  • Meaningfully consult with participants, families, clinicians, providers, and the disability community before implementing major changes.
  • Stop promoting misleading narratives that portray people with disability as exploiting the scheme for leisure activities, while ignoring the essential role these supports play in enabling safe and dignified participation in everyday community life.

People living with disability should not have to defend their right to safely participate in an ordinary life. Which was the whole premise of the NDIS in the first place.

Kind regards,