NDIS Cuts Threaten Hard-Won Independence for Participants Like April Coulson

Seven years ago, April Coulson went to bed an active, independent teenager and woke up unable to move from her armpits down. A sudden bleed on her spinal cord left her paralysed, a terrifying and life-altering event.

“My strength and my ability to even sit up was completely gone,” April, now 26, recalls of that devastating day. It would take two years for doctors to find answers, revealing rare blood vessel malformations likely responsible for the bleed.

After six months in hospital, April returned to her parents’ Brisbane home. She was extremely dependent, unable to transfer herself, shower, dress, or even hold herself upright in a wheelchair for long.

A Journey Towards Independence, Powered by NDIS

In those early, critical days, the National Disability Insurance Scheme (NDIS) stepped in. The scheme, designed to support Australians with permanent and significant disability, provided funding for crucial services.

Support workers, funded through the NDIS, helped April with essential daily activities like showering, dressing, and eating. She relied on them for transfers in and out of bed and into a shower chair.

The NDIS also funded vital equipment, including her wheelchair and a ramp for her family home. Crucially, it covered intensive therapy sessions: exercise physiology, physiotherapy, and occupational therapy.

“In the very early stages, it was sometimes twice a day,” April explains. “It was amazing. One of the whole reasons that I am where I am today was the support I was receiving.”

Consistent therapy proved life-changing. April credits it with preventing pressure sores, a common and severe complication for people with spinal cord injuries that can lead to lengthy hospital stays.

Over time, she built strength, no longer needing to be strapped into her wheelchair. She learned to drive a modified car, transitioned into full-time employment, and even came off the Disability Support Pension, a government payment for people unable to work due to disability.

April also significantly reduced her need for support workers, now requiring only four hours a week for help with housework. Her journey is a powerful testament to the NDIS’s potential to foster independence and participation.

Unexpected Cuts: NDIA Reduces Critical Support

Despite April’s remarkable progress and her medical team’s expert advice, the National Disability Insurance Agency (NDIA) — the body responsible for managing the NDIS — has recently made significant cuts to her plan.

April’s physical therapy hours have been slashed by two-thirds, plummeting from six to just two hours a week. A request for funding to replace a necessary $5,000 ramp for her home was also denied.

In a written decision following an internal review, an NDIA delegate stated the extra therapy hours and replacement ramp were not considered “value for money.” The delegate suggested that unqualified support workers and family members could help April with her exercise routine.

April strongly refutes this, highlighting the significant safety risks. “I’m already extremely injury prone with severe osteoporosis and other complications,” she explains. “To put myself in the risk of someone who isn’t qualified is just a danger to me.”

Her therapists use specialised equipment like hoists and slings to help her into upright positions, requiring two qualified exercise physiologists for safety. Replicating this at home would necessitate expensive equipment and multiple trained support workers, which April says is simply not feasible or safe.

“The really disheartening thing is I’ve had doctors, exercise physiologists, occupational therapists, and physiotherapists, all explain and write to the NDIA justifying why it’s not safe,” April said.

The reduction in therapy has taken a heavy toll on April. She reports a significant increase in pain, tightness, and fatigue, forcing a greater reliance on her parents and sister. She now worries she may have to give up her full-time job, reversing years of progress.

NDIS Architect Raises Alarm Over Funding Decisions

Dr. Martin Laverty, one of the original architects of the NDIS, has voiced deep concern about such cuts being made against the advice of health professionals.

“There’s something very wrong with the way in which our assessment for people with disabilities is currently operating,” Dr. Laverty said. He notes a broader trend of the NDIA reducing funding for therapeutics, active overnight support, and community access.

As CEO of disability service provider Aruma, Dr. Laverty believes if health professionals recommend vital therapy for participants like April, the NDIS should fund it. “That’s why the scheme was set up in the first place,” he added.

While supporting the federal government’s efforts to ensure the NDIS’s long-term “sustainability,” Dr. Laverty cautions that the current system is “no longer fit for purpose” when it leads to outcomes like April missing out on essential supports.

He highlights that a new support needs assessment tool is expected within the next 18 months, raising questions about how to keep participants safe in the interim.

NDIA Responds to Funding Allocations

The NDIA did not comment on April’s specific case. However, in a statement, a spokeswoman affirmed that the agency reviews “all submitted evidence, including from allied health professionals, when making decisions on an individuals’ funding allocation.”

The statement added, “While every request is considered, some requests may not be approved, as we are required to make decisions as to what is reasonable and necessary.” The “reasonable and necessary” criteria are key principles guiding NDIS funding decisions.

A Mother’s Pride and Growing Worry

April’s mother, Ann-Louise Coulson, is “incredibly proud” of her daughter’s resilience. She recalls the uncertainty of April’s recovery in the hospital’s first week. April even completed her university degree from her hospital bed and her master’s while undergoing intensive rehabilitation.

Ann-Louise is grateful for the NDIS’s role in helping April become an “independent and productive member of society.” However, she is now deeply worried about April’s deteriorating condition due to the reduced therapy.

Without regular physical therapy, April experiences increased spasticity — involuntary muscle stiffness and spasms — and her body becomes uncomfortably tight, like “sitting in an economy class airline seat all day long.”

“She’s just worked so hard,” Ann-Louise said, adding that it feels unfair that April’s initiative and discipline are not being rewarded. “Sometimes I think if she quit her job tomorrow and went back on the disability pension a lot more things would open up to her.”

Next Steps for Participants

April Coulson is appealing the cuts to her NDIS plan at the Administrative Review Tribunal (AAT). The AAT is an independent body where individuals can challenge government decisions, including those made by the NDIA.

This case highlights the ongoing tension between NDIS “sustainability” and ensuring participants receive the “reasonable and necessary” supports vital for their health, independence, and ability to contribute to the community. Participants facing similar cuts are encouraged to gather strong evidence from health professionals and seek advice on their rights to appeal.

Hazel Chen

I work in marketing and communications for NDISLocal, helping connect NDIS participants, families, and providers with clear, useful information about the sector. I'm passionate about making the NDIS easier to understand and navigate, and about giving disability service providers a platform to reach the people who need them. If you'd like to know more about anything covered in this post, or you're a provider interested in being featured, feel free to get in touch.