NDIS cuts force participants to fight for basic rights

NDIS Support Cuts Leave Participant Unsafe at Home, Sparking Wider Concerns

A diagnosis of multiple sclerosis (MS) dramatically changed Berwick woman Chelsea Larkin’s life in 2021. Years later, she finds herself not just battling her progressive illness, but also an NDIS system she says has left her physically vulnerable and emotionally drained.

Her experience highlights a growing concern among NDIS participants and providers about funding decisions and the real-world impact of changes to support plans.

A Rapidly Changing Life, A Constant Fight for Support

Chelsea’s condition has progressed rapidly to secondary progressive MS. She now uses a wheelchair, is prone to serious falls, and relies on support workers for daily tasks like toileting, meals, and safe transfers.

For years, Chelsea diligently provided extensive medical assessments, neurological tests, scans, and reports to the NDIS, demonstrating her increasing need for support as her condition worsened.

Safety Compromised After Funding Removal

The turning point came after Chelsea moved into a Specialist Disability Accommodation (SDA) home in Berwick. SDA is a type of housing designed for people with extreme functional impairment or very high support needs, allowing them to live more independently.

Following a plan review, funding Chelsea had been using flexibly for essential daily assistance was suddenly removed. The National Disability Insurance Agency (NDIA), which manages the NDIS, determined she was no longer eligible for this level of care.

An internal review upheld this decision, leaving Chelsea with no option but to appeal her case to the Administrative Appeals Tribunal (AAT).

“We Lost Not Just Funding, But Safety, Humanity, Independence, Just Dignity”

The consequences of losing her support workers have been immediate and severe. Without assistance, Chelsea has fallen repeatedly, sustaining injuries to her head and face, including extensive bruising.

In one harrowing incident, she lost consciousness for over an hour after falling in her bathroom. An ambulance was called only after a colleague checked on her when she missed a work meeting.

Her healthcare team is now seriously considering whether Chelsea needs to wear a full-face helmet at home to protect her from further head and facial injuries when she is alone.

Beyond physical danger, the lack of support has forced impossible choices. Unable to safely manage toileting alone, Chelsea has significantly restricted her fluid intake during the day. This dangerous practice leaves her dehydrated and exacerbates her fatigue.

“I felt like they really pulled the wool out from under us,” Chelsea shared. “We really did lose not just funding, but safety, humanity, independence, just dignity.”

Much of Chelsea’s day is spent alone at home. Even leaving the house has become increasingly difficult without help, taking a significant toll on her mental health and emotional wellbeing.

While a close friend has stepped in to assist with showering and navigating her home, and former support workers continue to provide meals and practical help, Chelsea worries about the long-term sustainability of relying on the kindness of others.

A Voice From Within the Disability Sector

Despite her challenging circumstances, Chelsea continues to work part-time as a people and culture manager at Experience Life, a disability support organisation. Her journey is unique, having started her career as a support worker before her MS diagnosis made her an NDIS participant herself.

This dual perspective gives her deep insight into the system. She has witnessed other participants struggle with funding cuts and fears the potential consequences for those with significant support needs.

Chelsea agrees that reforms are necessary for the NDIS to remain sustainable, but she fears the current approach is hurting the most vulnerable. “I think people shake when they hear ‘NDIS reform’,” she said. “People see it as this is going to hurt, and it’s going to hurt all the wrong people.”

Navigating the Appeals Process and Looking Ahead

As Chelsea awaits her Administrative Appeals Tribunal (AAT) hearing, a process that can take many months to a year, she is finding solace in her family, her dogs, and crochet – “small comforts” that help her navigate increasingly difficult days.

The AAT is an independent body that reviews decisions made by government agencies, including the NDIA. Participants can appeal NDIS decisions they believe are incorrect or unfair, though the process can be lengthy and emotionally taxing.

For now, Chelsea remains determined to fight for the essential support she needs to live safely and with dignity.

“You get defeated… and it feels like you are just always fighting a monster that you are never gonna win,” she explained. “But you have to keep fighting, there’s just no other option.”

What This Means for Participants and Providers

Chelsea’s story is a powerful reminder of the human impact of NDIS funding decisions. For participants facing similar challenges, understanding your rights and the appeals process is crucial. If your NDIS plan is reviewed and funding for essential supports is reduced or removed, you have the right to request an internal review by the NDIA, and if still unsatisfied, to appeal to the Administrative Appeals Tribunal (AAT).

Disability service providers also play a vital role in supporting participants through these processes, helping them gather evidence and advocate for their needs. This case underscores the importance of clear, robust evidence to demonstrate the necessity of supports, particularly when a condition is progressive.

While the NDIS undergoes reform, stories like Chelsea’s highlight the need for a system that balances sustainability with the core promise of ensuring participants can live safely and with dignity.