To the Senate Community Affairs Legislation Committee:

As the ageing parent of a severely disabled man I am grateful for the opportunity to make a submission regarding the National Disability Insurance Scheme Amendment (Securing NDIS for future generations) Bill 2026.

I also wish to point out how immensely grateful I am for the NDIS scheme which afforded hope for a life of dignity for people with disability.

For years I was involved in lobbying government (including Minister Bill Shorten) with many parents in my same position (including Bruce Bonyhady) also creating the Carer’s Alliance Party to bring attention to the issues our families were facing. We all wanted the same thing for our people living with disability: an affordable scheme which would allow us to age in peace seeing our disabled adult children age with dignity.

Now we could find ourselves in the position of possibly ending up where we began, having to lobby again for the necessities of life for our adult children.

My adult son Robert who suffered severe brain injury at birth, is 43 years of age with spastic quadriplegia with contractures, non verbal, limited vision, has scoliosis, a dislocated hip which can’t be operated on and respiratory problems…

However, due to the opportunities afforded him by the NDIS over the past years since its inception, he is now living his best life.

He now has accommodation in a ‘group’ home run by a trusted service provider called FIGHTING CHANCE.

His five weekly days are taken up by activities funded through his Core Flexible Community Participation Funding.

• Twice a week he attends a theatre company called MIDNIGHT FEAST which operates out of NIDA (National Institute of Dramatic Arts).

• This has brought enormous joy into his life and has been a capacity building and a community participation exercise without parallel.

• The major improvements have been in Robert’s communication skills, confidence in expression both with individuals and in group situations, movement (which for him is limited).

• Through this program he has performed on the OPERA HOUSE stage six times, performed at NIDA and at the Belvoir Theatre and has taken part in workshops with Bell Shakespeare.

• He has also attended a number of theatre productions at the Opera House, at the Neilson Nutshell Theatre (Bell Shakespeare) the STC etc. all possible through the MIDNIGHT FEAST Theatre Company.

• I cannot stress enough the importance of such a program in his life. It has enriched his life beyond all expectation.

• Robert also attends a day program twice a week at AVENUE run by FIGHTING CHANCE. Here he mixes with other people with disability and takes part in social and marketing activities that also fulfil his needs as a social individual.

• Once a fortnight Robert has hydrotherapy and three to four times a week he has physiotherapy for his lungs that are damaged due to birth injury and which, before the sustained physiotherapy would regularly put him in hospital with Pneumonia. He now has managed to dodge hospital visits and gets over any lung issues so much more easily.

• Therefore, Robert is a high needs recipient of the NDIS funding.

• However, each year we must return to show that he still needs the same level of funding or more in certain areas particularly concerning his physical wellbeing which cannot improve with age.

As a 76 year old parent with a 78 year old husband I am deeply concerned and in fact extremely anxious about my son’s future reassessments and reviews done by people who do NOT understand the extent of his lifelong and complex disability.

The anxiety and cost (if there is no money in the plan) of innumerable doctor’s reports, extless discussions with NDIA operatives is exhausting and dehumanising for both families and the person with a disability.

Another major concern is reduced plan flexibility. Life creates situations where needs may change creating fluctuations in funding needs.

Plan flexibility over a twelve month period (or longer) allows a person’s funding to be used according to their needs.

Three month funding (under the PACE system) is difficult for all involved, the person with a disability, the service providers AND creates more cost for the NDIA.

If Funded supports, eg. Consumables, transfer equipment, bedding, assistive technology are more difficult or are being cut particularly for people with severe or high support needs the consequences could be drastic.

These are NOT luxury items for people with disability, they are necessities.

Furthermore, I would like to point out how important it is for someone like my son to have a supportive ‘Support Coordinator’ and Plan Manager to ensure that Robert’s plan is being managed correctly as we, the parents age.

I cannot stress enough the need for a properly functioning NDIS where costs are contained by cutting out the bureaucracy of having to continuously prove that a person with disability is still disabled and NOT getting miraculously better. This puts people with disability and their families in a constant state of stress due to the fear that they might lose the life they have been promised and which allows them to be part of the world around them.

I thank you for your time in reading my submission and hope that it will be taken into account when thinking about where the NDIS is going into the future.

I am available for further discussion,

Mary Louise Mockler