NDIS Submission
. I am the sole informal carer, advocate and guardian for my two brothers, aged (62) and (59), who both live with profound and lifelong disabilities.
One has cerebral palsy, an acquired brain injury, schizophrenia and complex medical needs. He is non-verbal, wheelchair dependent and requires support with every aspect of daily living.
My brother has treatment-resistant schizophrenia and severe mobility impairment following decades of treatment with high-dose clozapine. He now requires a walking frame, experiences significant balance issues, struggles with basic daily tasks and is experiencing ongoing cognitive and physical decline.
Together, they require 24-hour support, seven days per week.
My brothers live with our elderly mother, who devoted her entire life to caring for them. Approximately five years ago, her own health began to deteriorate significantly. She now lives with dementia, chronic lymphocytic leukaemia and a history of bowel cancer. She is no longer physically capable of providing the level of care my brothers require.
As a result, I stepped into the role of primary carer for my entire family.
I am responsible not only for my brothers but also for my mother. I coordinate and manage their care, attend appointments, advocate with health services, manage NDIS matters, oversee support workers, organise medications, and ensure that everyone in my family remains safe and supported.
I do this while living with my own disabilities.
I have a permanent hand injury that limits the use of my left hand and I live with a serious mood disorder. In 2021, during a period of severe illness, I made a serious suicide attempt and spent 11 days on life support. I very nearly lost my life.
Despite my own health challenges, I made a promise to my mother that I would continue fighting for my brothers and ensure they could remain together in the family home they have always known.
The NDIS has made that possible.
Obtaining the appropriate supports was not easy. Over many years I have fought through
countless reviews, assessments, reports and reassessments to secure the funding my brothers genuinely require.
Today, their NDIS plans provide 24-hour support consisting of approximately 10 hours per day of one-to-one support and 14 hours per day of shared support.
This funding is not excessive.
It is not a luxury.
It is what keeps my brothers alive, safe, healthy and connected to their community.
Both brothers have significant medical needs. They require diabetes management, insulin administration, complex bowel care, medication support and ongoing nursing oversight.
They attend regular GP appointments, specialist appointments, pathology, allied health services and hospital visits. One brother is currently undergoing ongoing treatment through the Royal Victorian Eye and Ear Hospital, which requires travel of more than an hour each way.
They also require physiotherapy, hydrotherapy and exercise programs to maintain what little mobility they have left and to delay further deterioration. These therapies help prevent hospital admissions, falls, injuries, pressure sores and the future need for even more intensive and costly supports.
The community access hours they currently receive are essential.
Without them, my brothers would not be able to attend many of these appointments.
Without them, they would lose much of their connection to the outside world.
Without them, they would become isolated, withdrawn and trapped inside their home.
I am deeply concerned that proposed NDIS changes may result in reduced supports, reduced flexibility and reduced access to the community.
For my brothers, that would be devastating.
My brother previously lived in institutions during the 1990s and early 2000s, including Kew Cottages and Larundel.
During that period he experienced severe neglect. He was malnourished and on one occasion was left outside during extreme heat for an extended period, becoming severely
dehydrated and critically unwell, requiring hospital admission to keep him alive.
My mother was horrified by what she witnessed.
She brought him home and dedicated her life to caring for him herself.
The physical, emotional and financial toll on her was enormous, but she believed it was the only way to keep her son safe.
I am now carrying that responsibility.
The NDIS gave my brothers opportunities they had never previously experienced.
For the first time in their lives they were able to participate in the community, access appropriate therapies, receive consistent support and experience dignity, inclusion and a genuine quality of life.
The NDIS did not simply improve their lives.
It restored their humanity.
My brothers are not statistics on a spreadsheet.
They are human beings.
Any reduction in their support will not simply reduce services.
It will increase isolation.
It will increase deterioration.
It will increase hospital admissions.
It will place extraordinary pressure on carers and families.
And ultimately, it will place vulnerable people at risk.
The impact would extend far beyond my brothers.
It would affect my elderly mother.
It would affect my husband.
It would affect my daughter.
It would affect me.
I already struggle to meet the demands placed upon me as the sole advocate and informal carer for my family. If supports are reduced, there is simply no capacity for me to absorb those responsibilities.
I cannot simultaneously care for my mother, transport my brothers to appointments, manage their complex care needs, support my own family and maintain my own mental health without the assistance currently provided through the NDIS.
I fear what the future may hold if these changes proceed.
I have submitted formal submissions, written to Senators and Members of Parliament and spoken up wherever I can because I know what is at stake.
I cannot sleep at night worrying about what may happen to my family.
The proposed changes threaten not only the wellbeing of my brothers but the stability of our entire family.
I respectfully ask that you continue fighting to protect the rights, dignity and independence of disabled Australians.
Please continue opposing measures that would reduce support, restrict community participation or force vulnerable people back into isolation.
Thank you for reading my family’s story and for standing alongside disabled Australians and their families during this critical time.
Yours sincerely,