Howard Williams, a vibrant and active 65-year-old, embarked on what should have been a peaceful holiday cruise in Japan with his wife, Lorraine. However, fate had a different plan. A seemingly insignificant slip during the journey led to a catastrophic accident, leaving Howard as a quadriplegic.

The months following the accident, which occurred in May of last year, were filled with challenges and unexpected revelations for the Melbourne family. One such revelation, though seemingly minor, had a profound impact on their lives.

Currently, Howard receives assistance from two carers who visit for two hours each morning and another hour in the evening. Beyond these times, his wife Lorraine, at 70 years old, takes on the primary caregiving role.

Every morning, Lorraine rises at 3:00 AM to reposition Howard, preventing pressure sores. She steps in as a secondary carer daily and during weekends, a necessary move to manage the exorbitant costs of professional caregiving services.

“It angers me that the government has put us in this position,” Lorraine expressed, reflecting the frustration many feel when faced with such overwhelming circumstances.

“I get angry that the government’s done this,” Lorraine said. 

“The burden has been placed on me by the government because they are not providing the amount of support he needs. It’s not right that a birth date determines the care you get.”

The total cost of Howard’s true needs sits at roughly $290,000 a year – a figure the couple simply cannot sustain.

Howard, who worked and paid taxes for over 40 years, describes the situation as blatant “age discrimination”.

The situation has led to Lorraine starting a parliamentary petition last month calling on the government to remove the NDIS aged care limit for people with severe disabilities, which collected 4500 signatures.

“If Howard had the accident when he was 64 and 10 months, everything would be totally different,” Lorraine said. 

“He would have the support he needs to live as normal a life as possible. Instead, we are left navigating a system that wasn’t designed for us.”

The age limit for NDIS eligibility was one of the topics raised in The Aged Care Royal Commission, which handed down its findings in 2021.

One of the final report’s recommendations was that every person receiving aged care who is living with a disability should receive supports equivalent to those available under the NDIS.

The Morrison Government said at the time it would further consider the recommendation as the Support At Home program was being developed.

A government spokesperson said the NDIS and Support At Home were ”two distinct and separate programs underpinned by different legislation, rules and funding considerations”.

“The NDIS supports eligible people who apply before age 65, while older Australians are supported through the aged care system,” the spokesperson said.

“Support at Home provides aged care services based on the assessed ageing-related needs of the individual, regardless of their location, background and life experiences. This may include individuals who are living with disability.”

Spinal Life Australia CEO Mark Townend says the Williams’ story was a tragic example of a policy failure that remained unaddressed.

“Disability doesn’t end at 65, but the funding does,” Townend said. 

“People who acquire a disability later in life are forced into a system that simply wasn’t designed for their needs. This isn’t just unfair; it is discrimination embedded in policy. Access to the supports required to live safely and independently should be determined by need, not age.”

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