For 50 years, Barry Tiernan and his wife Mary, affectionately known as Jo, have walked through life together. They met in an RSL in Sydney, a veteran and his partner, building a life that has now culminated in a suburban rental in Perth.
But today, that bond is being shredded, not just by the cruel progression of Lewy Body Dementia, but by a government reform that Barry says has stripped away his peace of mind and his wife’s dignity.
When the federal government transitioned to the Support at Home program on 1 November last year, the promise was simple: “No one will be worse off.” For Barry, a Vietnam veteran living with PTSD and a body held together by metal joints, that promise has proven to be a hollow deception.
Under the previous Home Care Package (HCP) system, Mary was supported by a Level 4 package supplemented by the Dementia and Cognition Supplement, totalling roughly $71,000 a year. This funding was the lifeline that allowed Barry to keep Mary at home with 10 to 12 hours external carer support a week
However, under the new Support at Home classification, many high-needs patients are being funnelled into “Level 7” packages. For Barry, the maths is devastating.
“The new package based on the information provided, will give me 58,000,” Barry explains. Even with the grandfathering rules, which state they will be no worse off they would have $61000 however the loss of the dementia supplement, a roughly $7,330 annual allocation, creates a massive deficit.
“I could lose 13 grand. Not being listed as a level 8 and the loss of the dementia supplement ensures that we lose it. The system is contradictory. In one paragraph it says the dementia supplement will continue; in the other, it says it will fade out. If that’s correct, I lose 100 hours of external carer support immediately.”
For a carer, 100 hours isn’t just a number; it is the difference between a few good nights of sleep, or weeks of exhaustion.
Mary’s diagnosis of Lewy Body Dementia (LBD) is particularly volatile. Unlike the gradual forgetfulness of dementia and Alzheimer’s, LBD often manifests at “Stage 5 or 6” as a terrifying blend of physical aggression, hallucinations and a total loss of comprehension.
“The minute somebody is diagnosed with Lewy Body, they’re dead. They just haven’t died yet,” Barry says with heartbreaking bluntness.
He describes a 24/7 vigil where he is “always awake”, even when he’s sleeping, terrified that Mary will fall or wake up in a fit. The physical toll on Barry is immense. Despite his own disabilities, metal screws in his shoulders, knees and ankles, he is the sole person preventing Mary from falling, often while she is lashing out in a state of confusion and anxiety.
Despite the assistance of his daughter on a weekend or nightly it is a 24 x 7 lifestyle.
“When somebody throws a punch at you, the human response is to retaliate. You can’t hit a woman. So you’re fighting internally with yourself at the same time as trying to quiet things down and be mindful that they do not have full control of their limbs. That’s not easy.”
The government has lauded the new $15,000 Assistive Technology (AT) budget as a win for independence. But for those in the rental market, like Barry and Mary, it is a logistical fantasy.
The program suggests hoists are required for high-level 8 care, yet Barry points out that they “cannot put a nail in the roof” of a rental property. Furthermore, the $15,000 cap is swallowed instantly by the reality of medical pricing.
A hospital bed and a specialised pressure mattress alone can cost nearly $8,000, never mind the cost of a portable hoist at $4000 to $5000 if they could use one in the space that they have.
“The package is bullshit,” Barry argues, getting approval for equipment to maintain the right to stay at home requires a three stage approval system which often take 2 to 3 months where the application is bounced between Occupational Therapists to ACAT AND then to the provider to make the order plus delays in the orders leaving the client without that assistance when it is required. In some cases a simple walker or wheelchair.
The most haunting aspect of Barry’s story isn’t the financial loss; it’s the mental cost. Barry is a man who survived Vietnam, but the administrative “bullshit” of the Support at Home program has pushed him to a place the battlefield never did.
“If you’d have spoken to me 48 hours ago, I was ready to drive a car into a tree. I contemplate suicide and needed intervention to prevent it.”
When asked if he had ever contemplated ending his life prior to last year’s aged care reforms, Barry responded with a blunt “no”.
Barry is currently navigating a labyrinth shortage of respite care in Perth, trying to find a facility that can handle the specific needs of LBD.
He is appealing to Health Minister Mark Butler to reconsider the rigidity of the Support at Home levels and the “BS” questions asked during ACAT assessments that fail to capture the reality of living with a violent, cognitively fractured spouse.
| The Promise | The Reality for Barry |
| “No one worse off” | Up to a projected $13,000 annual funding drop. |
| $15k for equipment | Wiped out by a single bed and mattress and a hoist that may well be unusable in rentals. |
| Quarterly budgets | Prevents “saving” funds for emergency weekend respite or when times are tough and the pressure gets just that little bit too muchto get additional carer support |
| Dementia supplement | “Fading out”, resulting in a loss of approximately 60 to 100 hours of care. |
As Barry prepares for another ACAT assessment, he faces the very real possibility of losing more funding. Using a computer program and algorithms to make decisions as to who suits what level under the new system does not work.
For a man who has spent 50 years caring for his wife and time serving his country, the government’s “new and improved” system feels less like support and more like a sentence.
If you or anyone you know needs help:
Lifeline: 13 11 14
Dementia Australia: 1800 100 500
Carer Gateway: 1800 422 737
