Submission 490
Submission to the Senate Inquiry into the NDIS Amendment Bill / NDIS (Securing the NDIS for Future Generations) Bill 2024
Introduction
My name is Deidre Ellem. I am 71 years old and the lifelong primary carer, stated nominee and advocate for my daughter, Lee-ann, who is 52 years old and lives with a profound acquired brain injury caused by loss of oxygen during microscopic surgery when she was 9 months old.
Lee-ann’s disability is permanent, severe and lifelong. She requires support with every aspect of daily living including eating, transfers, toileting, showering, dressing, communication, mobility, medication management and overnight care. She cannot safely be left alone at any time and requires 24-hour supervision and support.
I make this submission as a mother, ageing carer and advocate who has spent over five decades caring for my daughter.
I also self-manage Lee-ann’s NDIS plan in my role as her stated nominee. This responsibility includes coordinating supports, managing providers, ensuring her complex support needs are met and continuously advocating for the supports required to keep her safe and living with dignity.
I support the need for the NDIS to remain sustainable into the future. However, I am deeply concerned that changes under this Bill may unintentionally create fear, instability and additional hardship for people with profound permanent disabilities and their ageing carers.
The Positive Difference the NDIS Has Made
Before the NDIS, I was Lee-ann’s full-time and only carer for her entire life. When the NDIS began in 2016, for the first time I felt hopeful that we would finally receive meaningful support.
Submission 490
After years of fighting for appropriate funding, Lee-ann now has a plan that properly reflects her support needs. The NDIS has significantly improved both of our lives.
The supports funded through the NDIS are not luxuries. They are essential for Lee-ann’s safety, dignity, health, community participation, communication, mobility and quality of life. These supports allow Lee-ann to remain living safely at home with me.
The Emotional and Financial Burden of Repeated Reassessments
One of the biggest failures we have experienced within the NDIS is the constant need to repeatedly prove Lee-ann’s disability and support needs despite overwhelming evidence that her condition is permanent and will never improve.
Lee-ann is not going to suddenly wake up one day able to walk, communicate independently or care for herself. In fact, as she ages, her needs are increasing.
Despite this, every year we are forced to spend thousands of dollars from her NDIS plan on reports, assessments and evidence just to prove she still needs the same supports she has always needed.
This process creates extreme stress, fear, exhaustion, uncertainty and unnecessary financial waste. Families like ours should not be repeatedly traumatised by having to continually “re-prove” profound permanent disability.
Ageing Carers and Fear for the Future
I am now 71 years old.
After 52 years of lifting, transferring and caring for Lee-ann, I now live with osteoarthritis, spinal degeneration and curvature of the spine. I have also experienced depression, burnout, chronic stress and severe sleep deprivation from decades of caring responsibilities and ongoing fear about the future.
My greatest fear is what will happen to Lee-ann when I am no longer here.
Submission 490
Our ultimate goal has always been to prepare her for life without me. Every day I try to teach her small ways to communicate her needs independently so she will be safer in the future.
For example, I practise with her to say things like “too cold” if her cup of tea is too cold, because one day I may not be there to recognise her needs for her.
These may seem like small things to others, but for someone with profound disability and limited communication, these skills are essential for dignity, safety and survival.
I live with constant fear that her supports may one day be reduced, that she may lose access to essential one-on-one supports, or that she may be forced into a group care setting that would be deeply harmful to her wellbeing.
I hope I live one day longer than my daughter because I do not fully trust that systems will continue protecting her when I am gone.
Community Participation Is Essential, Not Optional
I am deeply concerned about any changes that may reduce supports for social and community participation.
Community access is not an “extra” for Lee-ann. It is vital to her mental health, wellbeing and quality of life.
Without these supports, her physical condition would decline, her isolation would increase, her quality of life would suffer, and the burden on carers would become even greater.
People with profound disabilities deserve more than survival. They deserve opportunities to participate in community life, maintain relationships and experience joy and connection.
Assistive Technology and Essential Equipment
Lee-ann depends on specialised equipment including her wheelchair, adjustable bed, hoist, commode, modified vehicle and vehicle hoist system.
Submission 490
These are not optional items. They are essential for her safety, mobility and daily functioning.
I live with ongoing fear that when equipment eventually needs replacing, supports may be denied or delayed.
Without this equipment, Lee-ann could not safely leave the home, transfers would become unsafe, injuries to carers and support workers would increase, and her independence and community participation would dramatically reduce.
What I Want the Committee to Understand
People without disability often do not understand the invisible labour and emotional burden carried by ageing carers.
For over 52 years, my life has revolved around ensuring my daughter remains safe, healthy, included and treated with dignity.
The NDIS has finally provided supports that make this sustainable. But the ongoing fear of reassessments, funding changes and future uncertainty creates enormous stress for families already carrying lifelong caring responsibilities.
The system should not make people with profound permanent disabilities repeatedly fight to keep the supports they need to survive.
Recommendations
I respectfully ask the Senate Committee to reduce repeated reassessment requirements for participants with clearly permanent and profound disabilities and to introduce stronger protections for existing supports for participants with lifelong high support needs.
Community participation supports should remain recognised as essential supports, not optional extras. The Committee should also recognise the role and limitations of ageing unpaid carers and avoid reforms that increase reliance on family care.
No participant should be forced into inappropriate group or institutional settings due to funding reductions. Participant choice and control over living arrangements and support models must remain protected.
Submission 490
Assistive technology and replacement equipment should remain accessible and adequately funded, and all decisions affecting participant supports should include proper human oversight and review rights.
Finally, I urge the government to properly consult with people with disability, families and carers before implementing major reforms.
Conclusion
In those moments when Lee-ann lost oxygen during surgery as a baby, she did not only lose physical abilities. She lost opportunities many people take for granted — the chance to independently attend school, have a career, become a parent or live an ordinary independent life.
None of this happened through any fault of her own.
Despite this, Lee-ann deserves dignity, safety, stability and a meaningful life within the community.
The NDIS has given our family hope and support that we waited decades to receive. I ask the Committee to ensure future reforms protect people like Lee-ann rather than creating more fear and uncertainty for those already living with profound lifelong disability.
Thank you for considering my submission.
Yours sincerely,