National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 99
Good morning,
My daughter (24) was born with a rare chromosomal abnormality that results in a moderate intellectual disability. Because of this, she will require 24/7 care and support for the rest of her life and will never be able to live independently without supports in place.
When she was younger, and prior to the NDIS, I was unable to work due to the level of care her disability required. Our lives revolved around medical appointments, therapy appointments and providing constant support.
Once she started school, I was able to work limited school hours during school terms only. During both of these periods, I either earned nothing or very little, meaning I paid minimal tax and accrued far less superannuation than I otherwise would have. At the same time, we were paying for therapies out of pocket. In simple terms, I was earning less and paying more because my daughter has a disability.
When the NDIS was introduced, coinciding with her final years of schooling, funded support workers finally allowed me to return to close to full-time work. This meant I was earning closer to a full-time wage, paying more tax and contributing properly to my superannuation again.
Through the NDIS, my daughter accessed therapies that improved her skills across all aspects of daily life. However, she continues to live with a significant intellectual impairment and still requires 24/7 support.
After she finished school, she received an appropriate level of funding that enabled me to work full time while she was supported during my working hours. This support also allowed her to begin building a meaningful and rewarding life of her own. She made friends, started volunteer work and became involved in her community through social activities.
She also receives NDIS-funded support to participate in group social outings on weekends with other young people her age. She goes to dinner, movies, bowling and other community activities that non-disabled people her age take for granted. In addition, she attends short-term respite in a group setting approximately 4-6 weekends each year. All activity costs are paid for by my daughter from her own Disability Support Pension. The NDIS funds only the support worker hours, which have been critical in allowing both my daughter and my husband and I to experience more ordinary, sustainable lives.
We continue to receive funding for support workers, particularly under Assistance with Social and Community Participation. This funding allows both my husband and I to work full time while also giving our daughter opportunities to develop independence, social connections and life skills. Outside of funded work and weekend support hours, we provide all of her care ourselves. We take her on every holiday, to family events and to all social activities we attend. Caring for her has been part of every day of our lives since
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 99
she was born and will continue to be for as long as we are able, or until she develops the capacity to live more independently with 24-hour funded support in place.
With the proposed changes under the New National Disability Insurance Scheme (NDIS) Amendment (Securing the NDIS for Future Generations) Bill 2026, I have serious concerns about the proposed cuts to Assistance with Social and Community Participation funding.
As outlined above, my daughter will always require 24/7 care. If funding is reduced so she can no longer access support to participate in social and community activities, she will lose the friendships, connections and opportunities she has built over many years. Her world will become dramatically smaller if support is limited to basic care provided only within our home.
What sort of life is it for anyone if their existence is reduced to eating, showering and toileting, with nothing beyond that? No meaningful interaction outside of their parents. No opportunities to socialise with peers their own age. No outings, no community participation and no independence.
If these funding cuts proceed, my husband and/or I may be forced to reduce our working hours to cover the supports no longer funded through the NDIS. This would reduce the amount of tax we pay and further impact the superannuation we are able to accrue. Long term, this may leave us reliant on the Age Pension or Carer Pension because we will not have sufficient superannuation to support ourselves in retirement.
If this bill passes and these proposed cuts are implemented, my daughter’s quality of life will be significantly diminished. She will no longer be living an ordinary and fulfilling life — she will simply be existing.
It will also profoundly impact my husband’s and my quality of life, removing the limited opportunities we currently have to spend time together as husband and wife outside of our lifelong caring responsibilities.
Ultimately, these changes will not only impact families like ours emotionally and socially, but will also create long-term financial consequences for both families and the government alike.